Keeper or Loser: I’m Not Giving Up, But What Do You Think?

Warning: this is one of those rare personal posts specifically about my life, but I thought it was relevant to share.

hot wings signWe have two endearing names for rheumatologists which I’ve coined over the years: rheum doc and The Wizard. Rheumatologists are the doctors who decide not to sneak out Osler’s infamous back door. I always give them credit for that: historically, they’ve been given some of the most “hopeless” cases in many ways with very few effective tools to make a difference. Fortunately that’s beginning to improve for a percentage of rheumatology patients.

I haven’t mentioned going off to see The Wizard recently and many of my readers know why: I’m in need of a new rheum doc myself. Last spring, we lost Dr. Smart in the disgraceful bone scan debacle. Last summer, I called several offices asking basic questions about insurance or whether they frequently treat RA. While both daughters were home to escort me, we visited an office where the woman had answered all the questions well. The doctor was even a member of the ACR, but he turned out to be the one we named Dr. Perv. His dismissive manner and beliefs were extremely similar to the rheumatologists I met in 2009 and to what other patients often describe, with the exception of the assault of course.

You can imagine why I waited a little while to try again. Later in the summer, I found a clinical trial only a couple of hours from home so that I could try one more treatment (Rituxan) instead of “just wait for something to be approved” which was what Dr. Smart had instructed me to do one year ago when the doctor ended the Actemra saying it cost the office too much money.

In this clinical trial, I’ve realized there is no rheumatology care or exams. The nurses take my vital signs and do a pregnancy test each time I come in. So, while I do get a treatment – Rituxan – I still don’t have rheumatology care – the kinds of things we talk about here like monitoring disease activity or treating to target.

We finally visited a new rheumatologist today. Here’s a partial list of what the rheumatologist said:

  1. Doc asked how long “morning stiffness” is, but when I said I’m always stiff, looked surprised and repeated the question 2 different ways.
  2. “I don’t know whether the previous treatments actually did not work on you since I did not see you and examine you myself.”
  3. Doc asked about 10 times whether I have swelling, even though I answered specifically and affirmatively every time.
  4. Doc spent several minutes examining hands and did not look at shoulders. Less than 30 seconds on knees. I had not mentioned hands, but said knees and shoulders are the worst right now. (My hands are getting worse and are always painful – they just don’t look bad most days – so I don’t mention them.)
  5. Doc said to continue to take a full year of Rituxan treatments even if I they don’t help symptoms. “It is still removing the dangerous cells that could cause damage from the disease.”
  6. After the Rituxan, doc said I should try Simponi and Cimzia. Said “some of them do work by the same mechanism as the Humira and Enbrel” which didn’t really work, but that’s okay.
  7. After discussion of every medication on my list and every previous RA treatment, doc asked: “Have you tried Tylenol Arthritis?” I sat dumbfounded. When it was repeated, I asked “For my RA?” Then, “Yes, Tylenol.”
  8. Doc asked more than once about how activity could make my joints more sore instead of less sore. “You mean it gets better through the day, right?” “No, it gets worse.”
  9. When doc asked about previous imaging, I mentioned the nuclear bone scan results, but was interrupted twice to say I must have been confused about a DEXA scan. I continued to try to state that the scan showed inflammation. Doc said, “It showed inflammation?”
  10. As follow up, doc ordered CRP and ESR, not anti-CCP or any other antibody.
  11. Doc said to come back in 2 months. Nothing is to be done about my unusable joints such as knees which don’t straighten and have 2 year-old Baker’s cysts.

Several friends have asked for details, so I made this list. It’s a hard decision whether to publish it because the whole thing made me feel lonely and discouraged. My knees were in so much pain as they had to hang there off the table during the whole appointment. I could barely walk out of there and they acted like I was fine. Maybe we hoped for more up-to-date knowledge in a newly-minted rheum doc. I admit my expectations are pretty low at this point and I’ll wait to see the chart notes after my usually normal CRP and ESR come in.

The sad part for me is my joints are worse than ever and there are always more things that I can’t do. The Rituxan hasn’t helped at all and I’ve heard the world’s top docs say that treatment should be adjusted every three months if a patient is not “controlled” or in remission. But I’m supposed to just leave my knees (and shoulders, and all my other inflamed joints) like this indefinitely and take a whole year of doses of Rituxan and then go back on another TNF? Really? I’m not sure what choice I have, but I hope I figure out something.

Postblog: I’m really sorry I couldn’t think of anything funny to put in this post. As an antidote maybe you’ll want to see this funny post or this one to remind us how we help each other. Special thanks to Shannon, Bob, Dee, Sandie, and David for so much support yesterday.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

141 thoughts on “Keeper or Loser: I’m Not Giving Up, But What Do You Think?

  • December 17, 2011 at 12:07 pm
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    Well this is just depressing! And why, because I need to go find a new rhuemie doc and have committed to try after the new year. I have had one for two years now but haven’t seen him in nearly that but the office keeps prescribing my meds. No, not good care but at least I am getting my meds. I have been dreading this doc trip again. It took me years to find one I like in NJ but we moved. I am soooo sorry for you. But please DO NOT settle. I know you won’t. We just need to be strong once again, get up brush ourselves off from being plowed done but yet again and search on. (((HUGS))) from one ra patient traveling the doc search road to another.

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    • December 17, 2011 at 12:16 pm
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      thank you Deb. I never want to sound depressing. I’ll keep hoping like I always say & can’t wait to bring good news someday.

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  • December 17, 2011 at 12:07 pm
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    rawarrior The sad thing is my Rheum is about the same Hung up on swelling Exam inadequate but he treats me so I “settle” I have no choice

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  • December 17, 2011 at 12:41 pm
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    Kelly, I am so very sorry for what has happened to you with these “Horrible” totally Ignorant-Stupid docs you’ve encountered! Yes it is depressing…But its happened to you! Keep the fight going! Continue being your own Advocate like you’ve always have! I wish you nothing but positive thoughts in finding that “Right” Rheumy that finally gets his head out of his ass and starts doing some research on the true RAD and treating our symptoms and complaints rather than blood tests and inaccurate joint exams! Sending you tons of Love & gentle hugs esp. today…

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    • December 20, 2011 at 3:40 pm
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      What you said, Therese! I’m in total agreement with you.

      Kelly, you keep on keeping on to find a GOOD rheum doc. We all deserve the best rheum doc in the world, but I believe you deserve the best one more than most. You do so much for the rest of us – you support us, encourage us, and even cry with us. I just hate it that you are going through all this!

      I’m just a nurse – long retired – but I know more that this new rheum doc seems to. Lord, have mercy – and help us all!

      It’s ridiculous that in your area of FL, with all the universities and medical schools, you can’t find a knowledgeable, experienced, and ethical rheum doc. I’m sorry you live so far from here, because, as you know, my doc is really good and the perfect “fit” for me. Surely there must be someone down there for you. I’m praying, regularly and intensely, that you will find the perfect rheum doc for you!
      Love and gentle Hugs
      Elizabeth

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      • December 20, 2011 at 3:52 pm
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        The first medical school in our area just opened & they have not graduated any docs yet. We are keeping close tabs w/th them but I can’t say much obviously.. There really aren’t that many in the area – I travel 2+ hrs for the cliical trial since there seems to be a few more on the western side of the state actually – or down several hours south to Miami there are a couple. We are a couple of hours from Jacksonville and have gotten some horror stories from up there so didn’t try that – probably only word of mouth from here on in. No more believing “we are patient centric and modern” as a party line I guess. It’s not a business style we are looking for – just medical care. I believe the numbers that we’ve seen in my own experience accurately reflect what we’ve heard from patients – the ratio of good rheum docs I mean. The best places are known – Atlanta where u are and UAB and a few others like NYC.

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      • December 20, 2011 at 3:53 pm
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        Loved the part where you said “even cry with us” Elizabeth. What are friends for? ♥

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  • December 17, 2011 at 12:45 pm
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    Kelly,
    There is nothing funny to say about this. IMO it reflects the pathetic state of healthcare we have in place here, exacerbated by the fact that budding Docs today are still being trained as clones of the 20th century Docs who preceded them. While your disappointment is palpable, all of the guilt behind this circumstance must be borne by our outdated healthcare system.

    At least one solution is the nascent #occupyheathcare movement, a grass roots effort to wrench control from those who profit from complacent treatment of both the social disadvantaged and the suffering ones. Call it disruption or call it revolution. It’s become necessary to dig our way out of the deep hole we collectively find ourselves in.

    It grieves me to have to watch you blazing the trail through this ineptitude.

    -Bob

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    • December 18, 2011 at 3:07 pm
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      Incredibly well said, Bob! “It grieves me to have to watch you blazing the trail through this ineptitude.” It floors me what a journey many of us go through to find a rheumatologist who is a good fit for us. All I want for you for Christmas is a doctor who cares more about patient outcomes than about whether our test results are “textbook.” xoxo

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    • December 21, 2011 at 10:54 am
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      seconds to Bobs comment – he always says it so well as I have trouble these days pulling my thoughts together- I cried reading your post- and can feel the pain and frustration. You do so much for all of us that I want you to know I, with everyone else, send my prayers your way that the new year will bring a revelation of a new Doc who will treat you with empathy and compassion and a directive to find you relief.

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      • December 21, 2011 at 11:01 am
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        Thank you Kelly. I appreciate it so much.
        I have never asked for or expected any compassion, but it would be right to be treated without dismissiveness. I”ve had 2 rheumatologists. I would have stayed with the first who was very compassionate if the dr had knowldedge of what to do when 2.5 yrs of humira double dose did not work. I would have stayed with the 2nd who was more up to date scientifically even tho there was no compassion at all. Except that due to that lack of human compassion, I got “fired” for asking if I could please ask a question about the bone scan. So I do not think I’ve been picky at all – I just wanting to be treated. The only other ones we met said my RA is in remission in spite of high Rf / CCP all based upon a perpetually low CRP.

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  • December 17, 2011 at 12:56 pm
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    Oh Kelly, I am so sorry this rheummy was totally out of it. I am praying that you can find another rheummy who does tret the total patient,not just on what they see. I’m really starting to think we need to turn these types of rheummy’s in for inadequate treatment that could result in total disabling of the patient. thank you for sharing.

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  • December 17, 2011 at 1:50 pm
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    LOSER!!!!!!!!!!!!!!!!! And more exclamation points. This sounds like a mixture of the things that didn’t work with both of the rheumies I’ve seen. Rheumy #2 is a lot better now that he knows I will quit him, but I am still not satisfied with him and it’s pretty possible that I’ll end up seeing one from Vandy, depending on what happens with my knees and shoulders in the upcoming weeks/months.

    Kelly, just please know that you deserve better than this. Tylenol? Really? And 2 months? Really? I know that a lot of what we do is a waiting game, waiting for meds to work (or not), but this doctor did absolutely nothing for you, nothing. And remember, between our payments and insurance payments, we are buying these people yachts and such. We’re consumers, you know that.

    I think it is depressing because, on top of all of the things we have to deal with, we have to deal with people who are supposed to care about our health who are…I really don’t know how some of them get through school, honestly. And I also think that a lot of them get through school, and that’s it. Get as many patients in and out the door so they can bill them, but forget keeping up with new tech and advances.

    Makes me so mad. I vote loser.

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    • December 17, 2011 at 2:09 pm
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      I should also point out that we could get an appt next week there if we wanted one – or the week after Christmas – because it’s a brand new office so they are not at all busy.

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  • December 17, 2011 at 1:58 pm
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    I am so sorry you are having a hard time finding a Rheumatologist. I have the most amazing one in Seattle and feel very blessed.
    As far as the Cimzia goes, I have been on it for almost 2 years. It is the ONLY drug that has worked for me for longer than a year. I feel that it is starting to fail now and have an appointment with my doctor on Tuesday.
    I understand the “more things that I can’t do” thing. I have just given notice at work that I am “retiring” at the age of 50. I will be applying for social security disability at my husband and rheumatologist’s recommendations. That will be another fight I understand.
    I can’t imagine feeling the way you did after leaving your doctor’s office. I am so sorry! Sending good thoughts your way…..
    (I typically read most of your posts however don’t comment – just a lurker here!)

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    • December 17, 2011 at 2:12 pm
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      Lurking is fine 😉 I don’t mean to say anything against cimzia. It’s a TNF inhibitor and they did not work on my RA in the past – not for a year and then stopped – just did not help my joints at all. The odds are very small that Cimzia could work on my immune system with that track record.

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  • December 17, 2011 at 2:00 pm
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    I’m so sorry you’re going through this. I wanted you to know that your efforts to talk about this do help us. I have a great rheumy, but he’s two-and-a-half hours away. It was always my intention to choose a closer one once I was diagnosed and especially if I should progress to the point that I need infusions rather than the Enbrel/Plaquenil combination that’s helping now. However, the more I read, the more I know that I’ll just stick with this doctor rather than risk a change. I wouldn’t truly appreciate how rare he is or how dangerous it might be to switch if it weren’t for your site.

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    • December 17, 2011 at 2:13 pm
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      If you can work together and he listens and treats, and even better if he cares what happens to you – I vote to keep him!

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  • December 17, 2011 at 2:03 pm
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    You have struck a chord so I have to response. Been there done that. I feel your pain literally and figuratively. You are a wonderful advocate, but I think we can all learn to be better at it. I have had to learn to be very forceful and specific about my swelling and pain. It doesn’t come naturally. My usual approach is to suck it up. I have learned to interrupt the doctor with comments and questions and, if the doctor won’t partner with me to help the pain, I go elsewhere. I am fortunate to live in a large city with resources and that helps. But I think we all have choices regardless of location, particularly with our approach to the doctors.
    I would suggest telling the dr. how much your knees hurt while dangling on the bench at the time it is happening. Sometimes, you have to work really hard and innovatively to get their attention. You have to tell them that it you are not fine and that you must get relief from the pain.
    My cervical specialist told me that RA patients often greatly underestimate the pain they are in after I found myself telling him “my neck pain isn’t too bad”. My husband spoke up and reminded me of the special pillows, days on the couch and limited activity caused by the neck pain. I soooo underestimated my pain and he was in a difficult position to make recommendations. By the way, I use Dr. Rheumy as my “referee”. He gets all reports and is my go to guy for consultations to figuring out what to do with the information. I gave him that role and I think he likes it.
    I guess I am saying–keep at it, be forceful, don’t stop until you find a doctor or a group of doctors who will listen and work with you. Be specific about what hurts and how bad it is. My Dr. Rheumy can’t do it all. I am in that RA majority who doesn’t respond to treatment. Many of my joints are replaced–some multiple times. I anticipate more surgery coming up. It’s taken many doctors and lots of PT, but I am still walking, working with my hands, not taking narcotics, and enjoying my somewhat limited life (mostly).
    I think we are all like Humpty Dumpty in pieces at the base of the wall. Unlike Humpty, we should expect that all the King’s doctors will work long and hard to put us back together again. But we have to ask for it.
    I post this with all respect, empathy and kindness,
    CP

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    • December 17, 2011 at 2:31 pm
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      Caryl, I have posted before saying the same things. About my own journey. Please see: http://www.rawarrior.com/patient-assertiveness/
      Assertiveness and the typical underestimating pain done by rheum patients are both good points.
      It is so hard to speak up when you are in the midst of being dismissed as I felt yesterday. I even had a friend with me, but that did not help since it made me even more worried about being perceived as “defensive” or too “sensitive” – I don’t say anything about any pain or rudeness most of the time. The very few times I’ve spoken up for myself to an RA dr have turned out very badly. That is why I do not have a rheumatologist in the first place. Please do read the links in the post about that – the bone scan incident especially. I was dismissed for asking permission to ask a question.
      Yesterday, I was interupted, contradicted, and I felt doubted. The dr was more polite than some others but since the previous one which we tried sexually assaulted me, it makes me even more difficult to be assertive. I will keep trying – but I only wanted to explain what happened to some friends who asked. I almost closed comments for the first time ever since I realize this seen as an inviation to judge my personal behavior. But I thought this discussion could be useful for all of us anyway.

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  • December 17, 2011 at 4:07 pm
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    rawarrior Read your post-so very sorry-please feel the cyber pain free hug sent your way-Praying for you often & for others as we all fight

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  • December 17, 2011 at 6:24 pm
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    Oh, Kelly! I’m so sorry! That doctor is definitely NOT a keeper. It is so important to know that your doctor will really listen to you, respond to your concerns, and care how you are doing.

    I don’t believe it is good science to say that the Rituxan must still be helping you, even if you don’t feel any improvement. That’s crazy, and absolutely wrong! If you are not feeling any improvements after several months, than what Rituxan is specifically targeting is likely NOT what is causing your worst symptoms. It’s unbelievable to tell you to keep doing it for a whole year!

    I feel very blessed to have a good rheumatologist. But I’m having to travel nearly 4 hours away to get to her. It it soooo difficult to make that long trip. I have to pay someone to drive me, as I can’t do it myself. I really wish I had a good doctor much closer, but I’ve had such bad experiences with other doctors myself that it’s not worth the risk to try to change right now.

    My current doctor listens to everything I say, believes what I tell her, and does whatever she can to try to relieve my pain. Because my case has been unusually difficult, she even referred me to a specialist for a second opinion – without my asking for one. She evens hugs me at the end of my appointments! She’s not perfect – she doesn’t conduct thorough physical exams, and I can never speak with her by phone – only leave messages by voice mail with her nurse.

    I hate doctor shopping! I understand the incredible stress involved. But you really deserve and need the best doctor possible. I wish I had good recommendations for you.
    After many bad experiences in the past, I had reached a point where I just didn’t know how to talk with my doctors or what to say. I absolutely dreaded going to appointments. I felt that they never listened to me or believed me, no matter how or what I said. I really started to completely doubt myself. I felt that I must be the one causing these “communication” problems.

    But that wasn’t the case. There’s just a LOT of really bad doctors out there. It’s an incredibly frustrating and depressing situation.

    I’ve read your site here for a long time. You are a GOOD communicator! You clearly understand the issues involved, and I have no doubt whatsoever that you know what to ask and share, and how to say it. Your bad experience yesterday was due to the doctor’s issues, not yours!

    I really hope you can find a good one soon! Best wishes!

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    • December 17, 2011 at 9:07 pm
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      Debra, thank you for the generous encouragement and advice! I will not give up – although I’m not sure what to do next. I really do try to be polite and humble and yet give enough information for an honest evaluation. I try so hard not to be a bother but to still make sure they know what my symptoms are. Thank you for giving me the benefit of the doubt – I hardly give it to myself – and this experience can really shoot your confidence down. Youre right – it’s frustrating and depressing. and we have to fight against all that to try to get treatment.

      I wonder when you realized that there are just a lot of poor doctors and it’s not your fault? Can you tell me how you became sure? If it were not for the blog and the letters I get, I would have still thought I had “wierd” RA and it was my fault that it was not obvious enough. I do know I’m not atypical – thanks to our readers, but how can other patients know?

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      • December 17, 2011 at 11:01 pm
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        Kelly, to be honest, I only finally regained my self-confidence when I found this good doctor. It felt “right” from the very first meeting. And I only found her by a referral from another person with a similar disease (I have psoriatic spondylitis – even less well-known than RA).

        Word of mouth won’t necessarily find you a good doctor, but it can be very helpful. Other folks I have referred to my rheumatologist have also had a great experience with her. The specialist that my rheumy referred me to was very good to work with, too.

        I remember intentionally trying to “behave” and communicate in my previous medical appointments in whatever way I thought might help the most. Sometimes I would minimize my health issues and act casual about it all. Other times I tried to be more assertive and expressive. But I still felt ignored, humiliated and frustrated too many times to count.

        I hesitate to say it, but I still suspect there may be a significant “sexism” factor in the medical field, sometimes even with female doctors. One time, I saw the same doctor the same week that a male friend of mine saw for an identical minor health problem (a tick bite), and we were treated totally differently. He was taken seriously, and I was treated like a hypochondriac.

        Again, with another doctor, my male boss was treated seriously and with respect, while I and a female friend (another patient) was not. Coincidence? Who knows? {sigh}

        Right now, I see my rheumatologist every 6-8 weeks, and she spends 40 minutes with me every time (she knows I live 165 miles away). I bring a single sheet of paper with a summary of my health information – current medications, what is working or not, any side effects, and my list of symptoms that have changed or are new. We go over each issue one by one, and mutually discuss treatment options and any problems I’m having. I feel like I’m respected and listened to, and I know she really cares. Even her support staff are respectful and caring.

        We don’t agree about everything, but that’s OK. Right now, my personal goal is to have a similar healthy working relationship with more of my doctors. I’m dealing with a serious and chronic health issue, and I absolutely don’t need the stress of not being listened to by my doctors.

        I’ve finally discovered what a good working relationship with a doctor can be like, and that is the expectation I now have for my other doctors. If I’m not treated in a respectful way and it is a doctor that I’ll be seeing regularly for important issues, I’ll look for another one. In fact, I’m seeing a new ophthalmologist in March because I’m not happy with my current one, and I’ve been dealing with eye inflammation for a year now.

        Having a healthy working relationship with our doctors is so important, especially for people dealing with chronic health problems. I really wish there was a simple way that we could make it work. Right now all I can suggest is persistence, and obtaining personal referrals. And, just in case there really might be a sexism factor, use referrals from other women patients. Good luck, Kelly!

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        • December 18, 2011 at 12:07 am
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          P.S. In my own experience, if my first couple appointments with a doctor didn’t go well, it didn’t get better with time. If I felt pretty strongly early on that it wasn’t working out, our working relationship rarely improved, even if I tried to change how I interacted with the doctor in future appointments. Persistence in this case didn’t help.

          Has anyone else been able to improve their working relationship with their doctor, if it was fairly poor to begin with? I tended to tough it out with doctors I didn’t like for way too long. (The devil you know, etc.)

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          • December 18, 2011 at 3:24 pm
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            If this were Facebook I’d be clicking “Like” all the way! And on Twitter I’d be RT’ing! So many great points, Debra & Kelly! I probably wouldn’t know what a good rheum doc vs. a bad one was if I hadn’t had a number of them over many years.

            Kelly, you have had such a string of horrible encounters that I don’t blame you for having crisis of confidence. But I know what a great communicator you are; that’s I am certain that the doctors you have seen are at fault. I don’t know anyone who has such an encyclopedic knowledge of RAD who is not a doctor. I believe you are more knowledgeable about recent research than many rheumatologists. Thanks to your constant communication with other patients and your immersion in the e-patient movement, you understand the psychology of the patient better than 99.9% of the population!

            Let the support of your fellow patients give you the strength to get back on that horse and try again. xoxo

          • December 19, 2011 at 4:55 pm
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            I’m actually having a better time with a rheumy after I left him and went to another doctor, then came back to him. Before that, he was dismissive, cold, etc. I told him that I went to another doctor and told him the main reason why (that he didn’t listen to me about prednisone), and told him I would try him again before I try a third. He hasn’t been more thorough or anything, but he put me back on the MTX and was super nice and validated my dx. He is still new to me, though, so we’ll see how it goes, but he actually does know how to smile, how about that!

  • December 17, 2011 at 6:30 pm
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    Kelly, I hope and pray that you find a rheumatologist who deserves that title — “rheumatologist.” One of my co-workers is in Salt Lake City and was having horrible luck just getting into see a rheumatologist — six month wait, I believe. I suggested he contact the Arthritis Foundation to see who they would recommend in the area. He visited Phoenix on a work trip and I suggested seeing if his RA calmed down at all during the trip (it did). He is now considering a transfer to our Phoenix office. I suggested he again contact the Arthritis Foundation in Phoenix to see what doc they’d recommend and then go see the doc before making final arrangements for the transfer. I’ve been fortunate to have had excellent luck with doctors, in general, and rheumatologists, specifically. I don’t know if it’s because I’m in Southern California and have many choices — Los Angeles, San Diego, Orange County, etc., with many specialists to choose from. I’ve been with my current rheumy for 10+ years and he’s been with me through all the tried and failed biologics and DMARDs. I’m now at the end of the road, until new treatments are discovered and approved. I’ve had one round of Rituxan and it seems to be working, for now. I can completely understand becoming discouraged and frustrated after the experiences you’ve had and consider myself fortunate that in the 30 years I’ve had RA, the worst doctor experience I’ve had was just a great rheumy with poor bedside manner. My prayers go out to you, hoping you find a rheumatologist you can team up with to determine a treatment make the RA retreat. I do appreciate the work you do here on RAWarrior.com and recommend the site to anyone I know who I think it will benefit.

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    • December 17, 2011 at 9:14 pm
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      Thank you Vicki. I’ve never had a treatment work yet so I can appreciate your position. Good luck to you. It’s kinda silly how they create treatments that work well on a minority of patients and then tell other patients they must not really have the disease if it doesn’t respond to these treatments.

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  • December 18, 2011 at 6:41 am
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    So sorry Kelly!! I just don’t get some doctors! I mean really Tylenol!!! I work part time and I wouldn’t be able to if I didn’t take my hydrocodine and ibprophine, which still doesn’t get rid of all the pain just makes it more manageable. I am losing faith in Ra treatments I am now allergic to 4 of them!! And have never been in a remission. I’m getting worse!! Do doctors think we like living in chronic pain, do they realize how hard day to day life is!! My rheumy is supportive, but I need something that works!! I feel like a guiney pig!!! Not to mention the side effects of these meds that are not helping the ra!!! I say don’t settle!! I understand the knee pain and the bakers cyst!! Hang in their!! I know you are helping all of us, just wish someone could help you!!!

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  • December 18, 2011 at 6:44 am
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    Kelly, As the other Donna posted, I too, am a lurker. Many times I read your posts but simply do not have the strength to respond. (But in my mind I do.) As I have followed your saga in attempting to locate a sympathetic rheumatologist I became increasingly disillusioned with my own doctor. I spent a great deal of time trying to locate another Rhuematologist within an hour’s commute from me. They are few and far between around here. As a last ditch effort, I wore my RA Warrior T-shirt to my appointment. As my rheumy examined me, I casually mentioned that I had discovered the RA Warrior Web Site. I want you to know that she (my rheumy) literally stepped up her game. She ordered a full blood break down as I had not had one for years. (I have the one every six weeks to check my kidneys and liver.) She followed that up with the most intense exam that she has done in years! A week later a nurse called me to tell me that I do in fact have RA! Good to know. Anyway Kelly the word is out that the RA Warrior is a force to be reckoned with! Happy Holidays to you and yours.

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    • December 18, 2011 at 9:54 am
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      Thank you, Donna!!! Wish I could put your comment on a T-shirt!!

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      • December 18, 2011 at 3:29 pm
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        Woot! “RA Warrior: Keeping Rheum Docs In Line for 3 Years & Counting!”

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  • December 18, 2011 at 8:47 am
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    Kelly, I am so sorry that you have yet another disappointing rheumy. This one doesn’t sound as bad as some of the others but certainly not what you are looking for! We all deserve a doctor who treats us with respect; listens to us and believes us when we talk about our symptoms. And we deserve a doctor who really knows about the disease that they are supposed to treat.
    My daughter who was recently diagnosed with RA with off the chart positive RF factors and anti-CCP was told by her newly minted rheumy that RA “always starts in the hands”! It’s her knees and shoulders and neck that hurt!
    I think it is important that you have somewhere that you can turn to for care, so perhaps you should continue to see the fellow while you continue your search for a better relationship? (I know it sounds like cheating but we have to have our meds – right?)

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    • December 18, 2011 at 9:46 am
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      I don’t want to sound picky but if I only end up seeing this Tylenol dr once to meet him/her or once more to pick up the chart notes, I don’t want it to count as my rheumy. I’ve had only 2 rheumatologists each for 2 to 2.5 yrs and we met a couple others in between those 2 who were truly poor doctors and would not treat me since they said I was not sick. Then, this year there is dr Perv. who we met once and assaulted me and this one – Dr Tylenol maybe who I have doubts about. I know what you say about meds – but I think I’d rather tell my trusted GP what I need. I’ll have to decide. I keep thinking of more things that bother me – this doc was unaware that RA can affect the sternum joints and kinda shrugged about it – also I complained a lot about my cerivcal spine & it was not examined nor was 1 question asked about it. I’m concerned that I need good care and I won’t get it if the dr doesn’t know enough.

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      • December 18, 2011 at 9:59 am
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        I do feel for you! I had such a poor rheumy at first and now have such a good one! The first one didn’t diagnose me but had a good local reputation – I guess if I had walked in with a text book case that would have worked out fine for both of us but we all know that most of us are not text book cases.
        There are good rheumys out there – you just need to find one! What about the rheumy’s that are used by others in your local support group? Keep looking and good luck!

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      • December 18, 2011 at 10:00 am
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        PS: TYLENOL!? Really?!! I would have laughed at that!

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        • December 18, 2011 at 10:26 am
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          I did just sit there wide eyed for a moment. And then it felt like I was the one being rude. At that moment, I thought: I’m toast.

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  • December 18, 2011 at 9:40 am
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    OMG! I am so glad I found your blog on a Google Alert for “rheumatoid”! I had to break up with my doctor of a decade when, after 18 months of deteriorating communications I had the same encounter you had but with his the Physician Assistant.
    After the P.A. second guessed my pain report I said to her, “Why don’t you write the answer that you want instead of interviewing me and double and triple requestioning?” ‘It’s not about what I want, anyway, you’ve had a problem with me since I walked in today.’ I thought I was on the old “Candid Camera” or the new “Punkd”!
    Lady I appreciate your fighting with us and for us. Don’t give up. I see that the public is either in chronic pain or not. Those who are not, including health practitioners, cannot understand.

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  • December 18, 2011 at 9:47 am
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    Bless you Kelly for being so transparent with us, with me. I could have written your piece entitled, “I’m not giving up, but what do you think”. Thank you from the bottom of my heart. I don’t have the courage to say what you do. You have given us/me the best Christmas present that we could receive. I say this because I’ve been discounted and dismissed for so long. Perhaps more than the havoc this disease wrecks on our bodies is the dismissive, degrading way we are treated by the very ones we must appeal to for help. For me, the past 3 or 4 months have been almost a carbon copy of what you have written about doctor attitudes and behavior. I hear tapes playing in my head over and over and over of the unprofessional, stupid, ignorant, dismissive, uncaring, unhelpful, harrowing things that doctors have said to me over recent months and I wonder why I bother to go to them. You are a light in the darkness.

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    • December 18, 2011 at 9:50 am
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      Donia, you give me courage to keep typing!! Thank you so much. My fingers complain but I won’t stop.

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  • December 18, 2011 at 9:58 am
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    Has anyone collected data to see if it makes a difference in our treatment when the following factors come into play?
    1. Regional attitudes displayed by physicians. What part of the United States or state does the patient live in. 2. Where did the physician receive his training? 3. What nationality is the physician? 4. How old is the physician? 5. What sex is the physician? 6. Is the physician connected to a university and or doing arthritis research?

    Having lived all over the US I’ve noticed a big difference pertaining to the above.

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    • December 18, 2011 at 10:25 am
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      great questions and we should try to get to the bottom of it. I think WHO trained the dr is the number 1 factor. This Tylenol dr was not chosen blindly – I’d have to say that you’d expect this dr to be very good based on several of the factors you list. I do not give away identities on the blog at this time so I have to be careful – we’ve been trying to figure it out and I can’t say too much but it has to come down to the fellowship in rheumatology – who was the mentor? I know from some good docs who’ve spoken to me about how much influence this has.

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    • December 18, 2011 at 2:42 pm
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      Your post has made me so curious. Where did you find the best care? Where did you find the worst care? Did you find care much better with a female Rhem Doc, as I suspect? Any additional info. would be greatly appreciated. Have a wonderful holiday season. 🙂

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  • December 18, 2011 at 11:09 am
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    Unbelievable. Just… unbelievable. That there’s such a disconnect between the “textbook” learning and actually seeing a real patient. I’m so sorry you’re up against such morons.

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    • December 18, 2011 at 11:54 am
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      you hit on it Lene. I had the feeling i was the first RA patient this person had ever met. After leaving, I said, am I the first patient? Did they not see RA during the 2 yrs of fellowship after med school? If so, has no RA patient spoken up to them about any of the issues on that list? it was all the basics that made me want to start my blog 3 yrs ago – morning stiffness only in the morning? rreally? maybe in a small percetn of us…

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  • December 18, 2011 at 11:37 am
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    Well that just made me depressed….my rheumy is retiring this month and I really like and respect him. I’m not sure who is going to replace him and am hoping we ‘click’. He was my 3rd and for the first time I knew what it was like to get a thorough exam – looked and moved every single joint. He would explain everything and answer all my questions until I understood them. He even warmed up the stethoscope before checking the heart and lungs 🙂 The office is having a hard time finding someone – said they are hard to come by. The other rheumys are overloaded. I was discussing it with my DO yesterday and she said it takes so long to specialize and the cost of school loans are discouraging people from specializing. What a shame. My graduate school tuition for engineering was paid for…why not doctors in need? I’m fortunate enough to have a DO that is also concerned about my RA and willing to help when able. Hang in there Kelly – once again you are not alone! Wish I could package up some comfort and send it to you.

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  • December 18, 2011 at 11:57 am
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    I say Loser. 🙂 I am picturing the look of bewilderment on your face just as I had on mine this week when the infectious disease/internal medicine doctor told my 22-year-old daughter who has had two bad kidney infections in the last 2 months that the red cells and white cells she still has in her urine “should be okay” and if she is not having symptoms she “should be okay.” This after my daughter telling her the last two times, she had no symptoms of burning, urgency, etc., just moved right to the kidney with shaking chills, etc. I just got her UA report in the mail and all sorts of gunk in it but they are not treating until she gets symptoms, but of course she doesn’t get them. GRRRR! Not to mention she is on methotrexate and prednisone, which hamper the immune system. I am finding with all her appointments that 75% of the time I know more than the rheumy from my research (he has never heard of Plaquenil causing hair loss but there are HUNDREDS of reports on the web of people losing hair on Plaquenil AND this dr is in his 60s so has been around a long time). This is a frustrating situation for all RA patients and one loses faith in the medical community very quickly.

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  • December 18, 2011 at 12:35 pm
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    Bob
    You make excellent points but in addition I can’t help but put a gigantic pile of blame for our inept healthcare system and poorly trained doctors upon the shoulders of the all powerful pharmaceutical industry and the managed health care insurance companies. Some readers might enjoy the biography of the Mayo Brothers and the industry they built.

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  • December 18, 2011 at 1:11 pm
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    So sorry to hear of your bad experiences. I am newly diagnosed RA, and so far like my Rheum doc. He took care of my dad years ago and mom (used to be an RN) really liked him. I too find that with more activity my joints hurt more not less. I wake up stiff and move around then the aches and burning start. So far it’s my shoulders and elbows but then my hands too. I hope you have success in finding a good Rheum doc. There is no worse feeling than feeling you are not being heard or that everything you say is being dismissed I experienced that for 10 yrs prior to my Celiac diagnosis. I wish you much luck!

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  • December 18, 2011 at 2:19 pm
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    Odd, at my last visit my rheumy also told me to try Tylenol Arthritis if pain woke me up at night.

    I will not do it, of course, because of possible liver damage. I feel I already live on the edge with an occasional drink or glass of wine every couple of weeks.

    I wonder if McNeil Consumer Healthcare Division has been “advising” doctors about supposed safety and efficacy of their products? They decreased the safe dose of acetaminophen last summer, so the company may have countered it with a marketing campaign.

    It may be a coincidence, but it still sounds strange to me.

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    • December 18, 2011 at 2:56 pm
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      Sandra, I followed that news last summer and posted it here on the blog – I think the word Tylenol in the post leads to a discussion of that. I thought the same as you – that is NOT a safe recommendation since I take methotrexate. Tylenol is not a drug of choice for frequent use in that case. The ibuprofen & Lortab I told her I use are fairly effective and I was not asking about a new pain reliever. The whole thing about the Tylenol was wierd, like you say. Where are they getting this?

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  • December 18, 2011 at 2:38 pm
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    I am so, so sorry about your appointment and complete lack of care. I know exactly how you feel. It is so frustrating and really hurts my feelings, as I am sure it does your as well, to be treated with such a lack of compation. How could fellow human beings be so shallow and uncaring. The disappointment of yet another Rheum. Doc with minimal if no drive or skill to help you. I am so sorry. My heart aches for you.
    I to am having issues with my Rheum Doc. I have been ta;king to him as well as his staff about my elbows. I have filled out a chart of the body with my elbows as one of my primary affected joints for about 5 years now. But…have not received any attention in that issue until the muscles in my hands started wasting away. I have now in the last year received attention/concern and a need for action to resolve this issue. I have had 3 surgeries this year with one more to go. I had 2 carpul tunnel release surgeries in March and am currently recovering from an Ulnar Nerve Anterior Submuscular Transposition Surgery on my right elbow on 12-2-11. I am going to have the same surgery on my left elbow in late Dec. ir early January. What floored me was when the surgeon told me that my right elbow “should have been causing me severe pain!” I just chuckled and said, “It was causing me severe pain!” “It was like someone was hitting my funny bone with a hammer all the time!”
    Needless to say, one down one ti go. Better late than never. I think a lot of the Rheum Doc’s as well as other Doc’s are must interested in the insurance and $ than the patients. It is very disapointing and frustrating. We are only patients and we are powerless most of the time.
    I hope you find some comfort and help soon. You have been such a powerful force fo all oof us with RA. I can’t thank youn enough for enpowering us with knowledge and prompting me to ask more questions and educate myself on RA and my health. Have a very Happy Holiday Season. Be Safe and Take Care of YOU! 🙂 Please excuse any mistakes. I’m typing one handed.
    P.S. I have found a book that I am currently been reading that may help us. I would love to hear your thoughts in naturopathic medicine and the book, The Anti-Inflammation Diet and Recipe Book.

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    • December 18, 2011 at 3:06 pm
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      Thank you for typing one-handed Rean. This is good advice and information for patients and care-givers of all kinds – including doctors. I don’t know if anything can or should be done for my knees but shouldn’t they really be examined? No one ever asked me: o your knees hurt? what part? what do they do? how does it feel? or poked around on them at all. Only shrugs.

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      • December 19, 2011 at 5:23 pm
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        my knees and shoulders are my biggest pains right now, too. the rheumy i’m seeing now said there was a little bit of narrowing in my knees, but not much to worry about. the other one told me that if i had ra (which he eventually said i didn’t), that the dmards would allow my body to heal all the damage the ra has done. whateverrrr. i’m going to see my md this week, and i have it on my list to ask him, okay, so, do i figure out what’s wrong w/ my knees or do i remodel my whole house to fit my knees? this will have an effect, because we talk about remodeling our houses often and omg, he hates to spend money on his house lol.

        same thing w/ my shoulders, though. i’m gonna ask for mri or whatever for them from my MD. to me, it looks sort of like this right now:

        Rheumy: gives me rheum dx and toxic meds and liver panels
        Ortho: checks and dx’s neck/back bone/disc probs, gives me painkillers
        MD: everything else (except woman probs, oh nooooo, he doesn’t like to talk about the woman probs!! lol)

        i’m expecting a push towards pt this week, but i am going to resist until i get out of this near constant flare phase (hope it’s a phase, hope mtx kicks in soon). if they had midnight pt, i’d be game, because, by midnight i’d probably be loose and medicated enough to get out of the house.

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  • December 18, 2011 at 6:43 pm
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    I’m so sorry, Kelly. I really wish that so many people didn’t have exactly this problem. I have learned that with many docs, it doesn’t matter how much you know; they won’t believe a word you say because you don’t have a medical degree. I think it’s BS. And wtheck is wrong with them??? ugh! I hope that maybe he smartens up in time to see you again. I hope he gets better!

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  • December 19, 2011 at 1:22 am
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    Hi Kelly,
    So sorry to hear about your experience. Ten years ago, after moving, I was looking for a new rheumatologist. The rheumatologist I saw had a resident working with him; the resident wrote the note, so I was never sure if they both agreed…but the note said that my symptoms were out of proportion to the objective findings, that they weren’t sure I even had RA (though I had a diagnosis of RA from 3 prior rheumatologists). I felt completely patronized, that my symptoms/pain were completely dismissed. I changed rheumatologists and have been lucky to have a wonderful rheumatologist; I have been seeing her for almost 10 years now.
    On another aspect of your post: I have been on Prednisone a long time, and am currently having a horribly hard time just trying to taper slightly. However, in spite of that, Prednisone has been a life-saver for me, and has frequently been the only thing that allowed me to function. Have any of your rheumatologists suggested a course of Prednisone? I know lots of people never want to take Prednisone, but it can be enormously helpful to just have a break from the pain, even if temporary!!

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    • December 19, 2011 at 9:13 am
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      I’m glad you found the great rheumatologist and I can’t help but wonder about the pateints who still see those dismisive ones – I hope they also move on to be treated.

      I am coming to believe after hundreds of comments like this over the last 3 yrs, that there is something systemically wrong with the training that leads so many rheum docs to think that patients are not sick, or complain “out of proportion to the objective findings.” The patient report / patient outcome measure should BE the objective finding that matters most. This misunderstanding creates this viscous cycle where the medical textbooks actually include hypochondriacism/secondary gains/etc as if its typical for RA patients to have mental problems and be unable to properly report their own symptoms.

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    • December 19, 2011 at 9:26 am
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      oh darn I forgot to answer about the pred. got distracted. here’s my story: Both of the 2 rheumatologists I’ve had were strongly anti prednisone. however I did bring it up many times and finally did try it 3 times altogether. It was like the rituxan I think – kind of a last hope – thiking well at least I have that and it WILL work. The docs prescribed 5 mg. But eventually I was able to get one to say 10 mg /day. Was too low to make a difference I guess because it didn’t help at all. For a few days last yr I tried 15mg – I think it was written on my bottle by accident actually but it said “take 2 or 3 per day” so when 10mg did nothing, i tried the 15 for a week. I was on a high dose of estrogen for another problem at the same time & the side effects were really bad – so I looked it up – ashamed to say I didn’t beforehand – and the side effects at those doses should have been expected. anyway the 15 mg didn’t help the pain sitffness or swelling – I have met many patients who do not get relief w/ those low doses. it is a genetic difference. Even the old mayo trials of cortisone back in the 50’s found patients who were less responsive. so maybe w/ good medical care 20mg would help? I’d be willing to try. I want to be able to do things so badly, etc.

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      • December 19, 2011 at 1:10 pm
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        So sorry Pred didn’t work for you, at least at that dose. For me it is helpful to know higher doses are there when I really get desperate for relief. But I also know from personal experience and being in health care, that it is important to avoid the fallacy that what works for me will work for you, or what works for my patient/husband/friend will work and be tolerated for me or anyone else. Because you’re right; we all have not only different size, age, and weight, but different body chemistries and genetics.
        If you ever do try Pred again, just a few more words. I have incredible side effects, and can’t take more than about 5 or 7.5 mg at a time, so for example on 15 mg/day, I divide it in 3 doses. Otherwise, I get high blood pressure, agitation (often the cranky variety), palpitations, intense hot flashes, insomnia. The divided doses are not good for long term, but probably ok short term and better tolerated, at least for me. I don’t know how anyone can tolerate 40 or 50 mg! – but again, we’re all different.
        Thinking of you, and the support you give us all. Hope so much you can find something that works….

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  • December 19, 2011 at 4:10 am
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    TYLENOL??? Okay, that got me laughing, in a cynical sort of way. Oh Kelly…I would give my two cents and say yeah, tell your GP what you need and keep looking. (TYLENOL???) I know it’s exhausting and seems daunting, which is why I haven’t done a lot to go looking either. I know it’s easier to be an advocate for others instead of yourself. Good people, good Christians, often fall into this trap. But really…do you have the energy to spare to let this doctor suck it out of you? (TYLENOL???) I know this is a rhetorical question.

    I have found myself in the trap of “well she’s a nice person.” I have thought, maybe I can re-educate her/her staff. I would be okay giving energy to someone who wants the “patient view point” but your blog has made me think…

    My hands will not thank me for her being nice. Neither will my hips or shoulders. Every muscle in my body aches right now. My man watches me cry and holds me and is helpless to fix it. My children tell me, “When I’m a mommy, my hands will hurt.” Just because she’s nice does NOT make her a good doctor.

    Part of fighting, my fellow warrior, is sticking up for yourself and not being okay with this kind of treatment. (I’m kind of talking to myself here, too.)

    I mean, c’mon….TYLENOL????

    Jennifer

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    • December 19, 2011 at 4:34 am
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      And, just to follow up since I’m up at 4:30 because my body won’t let me sleep…

      Kelly, we all say these things with love. Maybe we forget a little bit that you’re not super woman, you feel the same way we do too, you hurt and get hurt. I think we want you to … react better, act better,stand up for yourself more, than we do because it helps, to see an example. At least it helps me.

      You’re a ray of hope for us, you see, and I bet that gets a little stressful. (No pressure!) But for me, at least, you come to every appointment I have, you are with me on my bad days and my good…many of us don’t know you personally, but we thank God for you and your good work.

      Oh heck, that may seem kind of mushy, but I’ve been rather emotional lately since I’ve been on Orencia. Please don’t think I’m being weird. 🙂 Just, this blog, you, the folks on the RA page on Facebook, y’all are some of some few bright spots in my progressively darker world.

      Jennifer

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      • December 19, 2011 at 9:20 am
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        I hope you are asleep now Jennifer. This is very perceptive of you – I do feel all kinds of pressure – most of it that I can’t talk about. But yes, I’m sick just like all of us & hurt every day in every joint & struggle to find support and worry about my kids having to take care of me…I work hard to keep up hope since I”ve never had a “good” day when the symptoms are less or a treatment that worked at all but I do it because its th emost important thing of all – to keep up hope. Whatever I used to be able to do before I think it’s come down to guts – just refusing to give up. That’s pretty much what I’ve told my kids to remember about me whether or not I’m ever able to go back to doing the things I used to want to be rememberd for.

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        • December 19, 2011 at 6:02 pm
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          kelly, i just want to say that i don’t expect you to be a superhero. you’re human like the rest of us, and i expect that you have same kind of feelings and problems the rest of us do. you don’t have any super armor that shields you from feeling overwhelmed or dismissed or any of the other feelings that comes with visiting a doctor who’s supposed to know his stuff. a lot of them seem to put on airs as if they are better or bigger than we are, or that they know better than they do, and it can be pretty intimidating.

          i am glad you didn’t close the comments, and if anyone sees this as an occasion to judge you, well, let’s just say that that person is sicker than all of us combined.

          i hope that your status as an advocate for us does not make you feel that you are any less human than the rest of us, or that you can’t speak freely about what’s going on. as a matter of fact, i think that most people who follow you follow you for the same reason i do: you are a real person with real problems just like me. though our disease tends to behave differently with different people, we’re all in the same boat. if you were perfect in every way, we’d have nothing in common. lol 🙂

          in other words, i hope you are not under any kind of pressure to feel that you have to “perform” any certain way, and that you are able to talk about your experiences and feelings as easily as the rest of us do, here and on the fb page.

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          • December 19, 2011 at 6:44 pm
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            I cannot thank you enough for understanding & taking time to say that.

  • December 19, 2011 at 10:30 am
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    Dear Kelly,
    Having RA is a lonely business indeed. I understand the discouragement that you must be feeling. Take a time out (& off) get some ice cream and come back fighting. In every battle there are moments when the fighting seems endless and wearying and pointless. In every battle there are also moments of triumph, exhilaration and certainty. Take some time out when you get despondent to remember your victories, supporters and goals. Ice cream is VERY important in this process trust me. This too shall pass my sister. Hold up your head.

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  • December 19, 2011 at 11:52 am
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    Kelly…I too must tell you how sorry I am that you had to go through that experience. I feel very blessed to go to the clinic I do. The head doctor’s wife has RA, the doc I have is sympathetic to my condition and LISTENS. It didn’t start off that way. My RA doc moved and I had to find a new one. I had just gotten off Embril (which DID help some) because of severe infections so I wasn’t terribly bad yet. I am not RA positive, which makes things a little dicey with Rhummys that don’t know me. But thank goodness over the years he and his PA understand me better and try to help.
    I really want to thank you for all you do in your life. I know it can’t be easy for you. I encourage you to keep looking and please DO contact the Arthritis Association for names of good docs AND to report your bad experiences. It may save other from going through what you went through.
    I wish you blessings and LUCK in your search. I think we ALL know how hard it can be and we’re pulling for you.

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  • December 19, 2011 at 12:05 pm
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    Oh, Kelly, I’m so sorry. He’s definitely a loser. I have a wonderful Rheumy at HSS in NYC, if you want his name please just shoot me an e-mail. He’s done wonders where others only scratched their heads and said things ALMOST as stupid as asking me if I tried Tylenol Arthritis. Yes, he’s definitely a LOSER!

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  • December 19, 2011 at 12:41 pm
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    Oh, Kelly,
    Sometimes we just don’t “feel” funny. It’s not just your sense of humor that makes you endearing, but your
    determination and attempts to adjust to each new hurtle. May you and your family have a Blessed and beautiful
    Christmas.

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  • December 19, 2011 at 1:18 pm
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    Kelly, a little hope. Simponi is working for me, when Enbrel (which had worked 10 yrs ago) stopped working (5 yrs ago), and every other TNF failed me for 5 yrs. I was at the point of waiting for something new to come out. I started Simponi this past July, and I get 3 week of good response for every 4 week injection. (((hugs))) and I’m so sorry you have such horrid rheums in your area. Is it worth it to fly across the country to see one? It might be. I used to fly a few times a year from AZ to WA to see a specialist I couldn’t give up.

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  • December 19, 2011 at 1:25 pm
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    It does seem hopeless. I know I am completely discouraged. Continued joint damage despite all the treatments. I still haven’t had a doctor do nuclear bone scans despite asking for them.

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    • December 19, 2011 at 1:30 pm
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      It is not common yet for RA, Lori. Apparently this dr had not heard of it. The scans have to be performed and read just right. Some places do them routinely, but others just think it sounds odd because they don’t know about it yet. Don’t give up – everytime we hear of a patient having success we know that could be us one day.

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  • December 19, 2011 at 1:37 pm
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    I wanted to add that though I’ve had well established RA dx (juvenile onset, age 10), when I was living in AZ I went to Mayo there for a full workup. Insurance would cover it, and I was at the end of treatment options at the time. My rheumy was ineffective. So I went to Mayo and after tens of thousands of dollars of tests and workups to see if I had anything else contributing to the RA misery, the doc concluded: there was nothing wrong with me. He didn’t even think I had arthritis. He shrugged and said he had no idea why anyone was treating me for RA. Shrugged about the pain, inflammation, joint damage everything. He actually made me question 25 yrs of pretty standard established disease progression, and made me feel like I had made the whole thing up out of my head.

    Sometimes even “the best” let us down.

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    • December 19, 2011 at 1:48 pm
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      Unfortunately, I’ve heard that before here. I can only imagine how that made you feel after 25 yrs of dz progression & treatment. It does take the wind out of you – I was COMPLETELY stunned in 2009 when I had to look for a new rheum doc in order to try a new treatment (that dr ONLY used Humira and it had not worked after 2.5 yrs double doses) to find some rheum doctors saying YOU DON’T LOOK SICK TO ME. What is that? When we finally got a good dr that one said “What does RA LOOK like?” I would have kept that dr forever even w/no bedside manner in order to avoid what is happening now. I don’t want to be sick either so I just say “well fine if I’m not sick then I won’t be treated…” but I keep getting worse and my life would just all slip away. I have to make myself fight. But of course I need a dr to do that with me.

      Reply
  • December 19, 2011 at 1:39 pm
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    Why do doctors even go into ‘rheumatology’ if they don’t believe their patients actually suffer from, or are disabled by it (rhetorical question)? Just baffles me.

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  • December 19, 2011 at 2:19 pm
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    So sorry you got a Loser again. Felt like I was on the exam table with you…getting my hands examined again, when other body parts are screaming. Keep asking RA warriors for recommendations, even if they are a long driv away in Florida. A consultation opinion where the doc is going to pursue Answers and treatment knowledge might be worth it. YOU NEED & DESERVE RELIEF!

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  • December 19, 2011 at 2:31 pm
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    This RA doctor is just not up on the latest RA news & research . That is his duty as a professional for his patients. It is a serious lack of knowledge to even say the word tylenol to a RA patient! It is shameful! I must say for me, it is not just one medication that helps me, it is a combination of medicines that work. Not cure me, but make life tolerable. Sometimes I stillflair,but over all the mix of meds are the secret. Just one alone is pitiful, but all together they make music! I’m on double the dose of cimzia so when you take it, don’t be affraid to demand a higher dose!

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    • December 19, 2011 at 3:02 pm
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      I can so relate to all your posts butthis one hits home where I am right now in my RA journey. I was diagnosed with fibromyalgia in 1996 and then RA in 2003. I guess i have been pretty fortunate with rheumatologists until recently. Because i suffer from both diseases and because they go strictly by the blood count test results, it is usually said That fibro is the problem. I recently had a really excrutiating flare onthe ulnar side of left hand. I was told to get nerve conduction tests, mri, and see orthopedic physician. I did not do the emg/ncv tests because they hurt and
      i knew it was not the problem. It was severe inflammation as revealed on MRI so I am about to be switched from Remicade (3rd biologic I’ve been on)……thats if my rheumy remembers what happened 3 weeks ago. Itis such a frustrating journey and I hurt all the time. My hands stay swollen and yes,love your post onthe pain scale and “how long r u stiff in morning”……….thanks for being such a wonderful advocate for RA….you r great!!!!!!!!!

      Reply
  • December 19, 2011 at 2:37 pm
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    Where to start? He is a loser! As is mine! My Rhuemy told me that the pain I was describing wasn’t RA pain. It’s the same pain I have had since the beginning that he said Was RA pain! I am in search for a Rheumy that has RA! He also asked how long does it take to get going in the mornings. I am fine in the mornings and get worse as the day goes. He said “then you don’t have RA”! OMG! Then I told him that is how this disease started…bad in the morning and better as the day went on. When I started MTX everything changed and reversed. He said “that’s how the drug is supposed to work”! REALLY? Because he just told me I don’t have RA? Such an ASS! Can’t figure out if he is just being a smart ass or is just plain stupid! Luckily I have a PA that I see that is precious! She is sweet, caring, smart and does a Very extensive exam. She spends 45 min with me every time. Wonderful lady!

    That’s my story. Hope you can find a great one…we all deserve it!

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    • December 19, 2011 at 3:57 pm
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      I knew just where you were headed with the morning stiffness thing…
      They ARE CONFUSED about this. I guess I need to be more forceful and stop being so gentle about it here. They are confused about the “morning stiffness” and the “usage principle” and “swelling” among other things. Maybe we need a tab here for docs to call attention to those pages.

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      • December 19, 2011 at 6:13 pm
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        okay, weird thing. rheumy #2 (the one i won’t see anymore) said that i didn’t have RA cuz my symptoms were ‘backwards,’ ie, got worse as the day went on. this is why he ‘undx’d’ me. several months later, and now, guess what. my RA is behaving the way he said it should, gets better as the day goes on. this is likely because i now have painkillers i use after dinner. so maybe it -does- behave ‘the right way’ -if- you have painkillers to mask the pain, that you take later in the day? lol? i’m gonna talk to my rheumy about this next month.

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        • December 19, 2011 at 6:46 pm
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          I once said that taking the steroids & nsaids in the morning instead of at night was one reason some may be worse in the morning: the meds are running thin. I agree w/you about pain meds too.

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        • December 20, 2011 at 8:00 am
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          Well….so glad he got your RA to behave the way HE wanted it to! That is just rediculous! I am just speechless!

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  • December 19, 2011 at 3:06 pm
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    Chemo for Breast Cancer ? Can anyone with RA share the impact of these chemicals in your body??? I’ve had RA 15 years…drugs from Prednisone, methotrexate, Plaquenil, Enbrel, and now Immuran after my kidneys failed 3 years ago…now functioning at 30%, no dialysis! Grateful!
    Please write if you’ve had Breast Cancer, or CHEMO. th

    Reply
  • December 19, 2011 at 3:28 pm
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    It sounds as if your rheumy is deaf. Have you referred him to an appropriate ear, nose and throat specialist?

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  • December 19, 2011 at 4:58 pm
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    Kelly, have you considered seeking orthopedic car for your knees and shoulder? I know it will just be treating the pain and/symptoms but maybe they can at least get you some relief. I started with an orthopedic and still see a leg/foot one and one that treats shoulder to fingertips.
    Also, have you seen a reputable pain doc. I’ve often gotten more comprehensive imaging ordered from the pain doc .
    Hugs!

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    • December 19, 2011 at 5:23 pm
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      Good ideas, Patti, I have been saying for a few weeks that I think an orthopedic is next. Thinking same thing as you – at least they may get examined? What does he do for your shoulder? Anything help?
      The pain doc I’ve seen said he only treats the back pain – it’s his specialty but he did say not to bring him any RA pain – that is for the RA treatment.

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  • December 19, 2011 at 6:15 pm
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    It’s nice to hear about people who have the same thoughts and feelings that I have. I chuckled when I read that the doctors always ask “how long does your stiffness last each morning”? It last all day every day!!!! Why can’t they understand that?

    I go to Hopkins for my RA and I love my doctor, but sometimes the doctors just don’t understand. I have to have a written business plan just to get out of a chair! Oh well. Patrick

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    • December 19, 2011 at 6:43 pm
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      I know why they don’t! Because they read a book that says “morning stiffness.” Its just like “morning sickness” during pregnancy – – I lasts all day in most women. Some man must have named it that. Forgive the joke please, Patrick.
      Wonderful Irish name you have!

      Reply
  • December 19, 2011 at 7:36 pm
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    I am so sorry you are still having trouble finding a good rheumy. Oh it makes me so mad! It took me years and several rheumy’s but I finally have had one the past year and a half that I love. When I first walked in to her office and knew she was actually listening and understanding and going to help me I burst into tears. It is unbelievable that you, who have done so much for those of us who are fighting RA right along with you, can’t find a good rheumatologist. Keep looking – don’t settle for this guy!

    Reply
    • December 19, 2011 at 8:12 pm
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      Thanks Amy! It’s good to hear your years of searching and several rheum docs paid off!! This one sounds great!! I will probably cry just like you did. <3

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  • December 19, 2011 at 8:21 pm
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    Kelly…I am so sorry to hear what you have been going through. Please know you NEVER have to apologize for not being funny. One of the great aspects of your site is the genuine way you present the info, as well as sharing your personal life. I hope the universe sends you in the right direction to find the doctor you need. I am glad you reported “the perv”. Has anything ever come of that? I have two suggestions for you. #1 Always trust your instincts and if you walk into an office or anywhere else for that matter and it does not feel “right” just leave. #2 I was just wondering if you have tried or are receptive to alternative medicine to supplement what you are doing. I go to accupuncture and do Reiki and although I wish I could say they have “cured” me……. for me they have provided an emotional edge.

    You are a bright light for many of us……Thank you

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  • December 19, 2011 at 8:30 pm
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    I am so sorry that you had to endure such a terrible experience . This mirrors two of my recent visits as well. Such a shame that when we begin to question or become emotional during an appointment ( this is about OUR life after all)we are told that we are ” fragile ” and perhaps should just get on with things…
    I too have had the suggestion of Tylenol Arthritis – mind blowing. When 8 of those a day did not aleviate my pain that was an indication something else was going on- but I don’t have a medical degree- I just know my own body -as do you. I decided the last Doc was a Loser when she told me to go to a gym and lift some weights, “start at 50 lbs ” she said – ” you look strong” “Thank you” – I said – “I will see myself out – no bother for a follow up- “

    Reply
  • December 20, 2011 at 9:36 am
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    Kelly-
    I have the name of a good, caring RA doc in Sarasota, FL that was given to me by a reliable source and I will happily share this info with you. You can email me at marcia@soulspiritjourney.com for details if you want.

    Reply
  • December 20, 2011 at 10:20 am
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    This is so horrible. Overpowered professionals.Isn’t anybody out there whose labor is to monitorize those people’s work?
    How can all those doctors afford to fail so badly while earning those amounts of money? Why there’s any official organization where you can formally complain, about such rude attitudes?
    That’s the problem. They’re few. And they know it, they don’t feel like there are three guys just behind them eager to apply for their position. So if they’re untouchable, why trying to improve? why would they need evolve as a professional?
    Damn, this really pisses me. Kelly, get advantage of this webpage, it’s worldwide known… It could be a good Loudspeaker to report this kind of abuses. Doctor’s names should become public, (even maybe not here) with some of their quotes – I bet you can get TONS of them in this site –
    “Oh, I can see strong CCP positive and RF, but you’re lacking swelling!! Even you might be in horrendous pain, I cannot diagnose you as having RA.”
    Problem of a rotted healthcare system.

    Reply
    • December 20, 2011 at 10:36 am
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      Yes, we’ve seen it here 100’s of times, exactly as you describe. If I were not sure I’d be sued, we’d name names. Maybe there will be a way one day to safely tell all – but patients still do a good job of it in their comments. And then there are the patients who tell of good rheum doctors who are obviously harder to find – but most say “after 3, I found the GREAT one.” So, what I’ve done so far is try to build up a list of the GOOD ones to try to begin sending people there – and ask all patients to help each other to find the GOOD ones to begin making an impact. The biggest impact we can make will be through our foundation – there is so much MORE we can do together and we are. Did u see today’s new blog? http://www.rawarrior.com/hoping-really-hard-2-battles-i-fight-to-win/

      Reply
  • December 20, 2011 at 5:02 pm
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    That rheumy was a jerk! Don’t settle. Inadequate treatment has long reaching effects. I’m a product of inadequate treatment, although mine is not due to a jerk of a doc, but to the lack of treatment for kids when I was dx’d. I am paying for it everyday. And I am grateful that it’s not worse.

    Reply
  • December 20, 2011 at 9:53 pm
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    ugh, I’m sorry Kelly.
    I see a Fellow at a clinic due to financial reasons at the moment. He is not what I would want if I had too much pain. I am lucky at the moment that for the last 3 months I have finally found relief with mtx. It took 8 months plus plaquenil to start working. I remember the horrible pain and swelling at the beginning of this ordeal,deep pain like I’ve never experienced, and by the treatment and lack of knowledge of my current doc, I would be so discouraged if mtx had not worked. I had my last flare in Sept. around the time I started planquinl, I thought that was weird, and so he told me to stop taking it as it probably wouldnt do much, also he upped the mtx to 8 from 6 while I had only been on 6 for 3 wks. After I left I thought that he really didn’t give the planq. or 6 dose mtx a chance to work, so I continued on both like the origional plan to give it a chance. I also pretty much designed my own pred taper to cope with that flare and got off of it just fine. Should be a surprise to him when I go in next that I’m still on planquinl. It’s like they throw the drugs at you just to see what sticks… He even said to me that “planquinil doenst really do much anyhow”. Then why bother adding it? I actually gave it time and I think it did help somehow. Sorry for the ramble, but i will end in saying I was lucky that in seeing a Fellow, I was able to see 3 (so far) of the regular rheums in the practice (it’s a university group) as the fellow has to have an attending doc. It was a great way to determine which doc I prefer (just 1 of the 3) for when I get real insurance. Funny also is that in town there is a practice with 2 docs that have an excellent reputation. They are not accepting new patients at the time unless under special circumstances, and they are also independant of both university/hospitals in town. Interesting for sure.
    I’m hoping you catch a break here soon Kelly.. thinkin of ya.

    Reply

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