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 21, 2011 at 2:41 am
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    I’m going to go against the grain here and vote that you should see this rheumy at least two or three times more before throwing the towel in on him. I won’t go into other reasons here right now, and I’m not looking for a fight with anyone, but do think that what you might need most right now is some consistent monitoring by a rheumy. It takes time to get to know each other and develop a relationship, and the guy might surprise you and be more receptive as time goes on. I am disappointed he didn’t suggest any xrays of any joints. I think if you see him again, you should bring that up. Don’t go into the ‘all joints’ hurt again, just bring up your worst two or three. If I recall, you haven’t had any plain xrays in a long time, if ever? If he doesn’t order xrays for even one set of joints then boot him for sure. Maybe you can get a referal to an orthopedic knee doc. Is there a reason you don’t or can’t try other Nsaids or has that been hindered by the experiences with the past docs? That’s the other discussion you should probably have with the doc. Just my two cents at this point. Hoping things turn around soon.

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    • December 21, 2011 at 9:41 am
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      That’s fine Chelsea, I think we’ve disagreed more than once & still had productive discussions that hopefully benefit us and others. And it’s obvious that you care too.

      The “one joint at a time” thing is something that I actually have been saying for months. I even have a blog post 1/ 2 written about it – one of many – so yes unfortunately that tactic may be needed.

      And I’ve been saying to KB & other friends that I must go see an orthopedist next – it is probably in some comments here too. To get my knees and shoulders properly examined. What bothers me is that any other person I know who had this trouble with even one knee or shoulder would be examined and treated, but I’m not even to be examined because I have it in too many joints. That blog post is 1/ 2written as I say but that idea is obviously flawed. Would that approach be accepted in ANY other specialty? No. Think about treating cancer tumors in the leg but refusing to treat the ones in the lungs because the patient described too many at once. I doubt that I’ll be convinced that is good care.

      Nsaids? I’ve tried several, as I had told the doc. The only one that works is ibuprofen and there is no need to switch. Tylenol is not an nsaid of course and is not anti-inflammatory. It is also not an appropriate drug for regular (daily max doses) for a person on methotrexate due to liver care. It is also ineffective for pain relief in 80-90% of the population due to genetics – most people do not get any benefit since almost all of the drug is in the liver w/in a short time – much has been written on that elsewhere and a friend in who works in the field told me that it would not even be approved today as an analgesic if it were put thru the current CT regime. All that aside, it is not effective for RA in most patients and not an appropriate suggestion from a rheumatoogist in my opinion. But that was very small compared to the other problems this doc has.

      I think one of the most discouraging things was that there was no “consistant monitoring” as you mention that would be even possible because there is no monitoring. There is no monitoring w/out a joint count or a HAQ or a MSUS or MRI or SOMETHING to show disease activity. For at least 1/2 of RA patients, the sed rate &crp are w/in normal ranges – that is not a consistant disease indicator (which I’ve written about elsewhere of course). Anyway, that’s what was ordered & they are going to let me get xrays for hands & knees. Xrays do not show most disease activity as I’m sure you know. So, I’d really doubt the xrays or the blood tests will provide any “monitoring” because they will only serve to show what the doc seemed to think anyway: that I don’t have disease activity – I can only suspect that at this point based on what was said & done & since I haven’t seen the chart notes yet as I said & this was the most cautious-sounding doc I’ve met – – No flippant remarks or sarcasm were made like I’ve heard before about “You have no form of arthritis at all” or “You have no inflammation, do you HEAR me?” We all agreed that the doc played cards very “close to the vest” and tried to not reveal any judgments. So like I wrote in the post – I did not make a final decision because I am waiting to see what is written. But piecing this togehter w/ a few other statements of the doc that KB and I have considered over the last few days, it does not look good.

      At this point, my bottom line is that this doc lacked essential knowledge that I need in order to get any monitoring or care – there are some key knowledge points that modern rheumatologists need to have that he/she does not have.

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  • December 23, 2011 at 12:57 am
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    Thanks for sharing your story about Tylenol doc. As my brain tries to grasp it and some of my own similar experiences, I wonder if he just didn’t know what to do with you? To compensate, he down plays your needs and makes absurd recommendations. I recently had a conversation with a compasionate MD regarding the subject of Internal Med docs and others that won’t accept peope like me with complex (not easy to treat)”issues”. His explanation was that the pressure to see more patients forces docs to choose “easy” patients. I can intellectually grasp the business end of medicine but even in my humbly paid job, I try to do things right. Many doctors seem to go for the “it’s not me it’s you” approach. At least be honest with me and tell me that you don’t know how to treat me. I am currently blesed with a great Rheumy but I travel 2 hrs each way to see him. If I have to move to infusions, I am not certain what I will do. One day at a time! God Bless!

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  • December 23, 2011 at 3:43 am
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    You don’t have to always write something funny, Kelly. It’s ok to have a bad day and write a post talking about how hard it was or even ranting. Not every post has to be positive. Granted we try to be positive as often as possible but people need to get that your life is not anywhere near all roses. They need the education and the reality. You deserve nothing but the utmost respect for what you have been through and will continue to go through.

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    • December 24, 2011 at 8:26 pm
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      I hope you are still reading Jenn – I’ve been offline 2 days – THANK YOU!!!!!

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  • December 26, 2011 at 11:01 pm
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    I wish you lived near Spokane, Wa. I love my rheumy, Dr. LaSalle. He senses more about me than I even realize. He believes I have RA and fibro and helps me feel better. Best wishes to you.

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  • December 26, 2011 at 11:05 pm
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    Before Dr. LaSalle diagnosed me with RA, I spent a couple of years with my family physician and lung specialist trying to figure out what’s wrong with me. They thought I had mild thyroid issues, heart burn and asthma. ok. you don’t feel like every bone and muscle in your body is twisting in pain when you have asthma, heartburn and thyroid issues. 2 years of this nonsense, before the podiatrist said, “you know, you sound like some of my RA patients. woul you mind getting a blood test?” he saved my life, then referred me to my rheumy. I’m blessed with a very caring and knowledgeable rheumy and I’m so sorry that you can’t find one like him. soft hugs and kisses in the mean time.

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  • December 29, 2011 at 1:09 pm
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    Kelly, I appreciate *all* your sharing. Whether you’re writing about medication or personal challenges, you speak in many ways to and for all of us. I truly believe we learn from each other’s stories even when the experiences are different. In the midst of that difference is the bright heart that perseveres despite our shared disease. My gratitude to you and wishes that you have many many better days (and much better care) ahead.

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  • December 29, 2011 at 2:20 pm
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    I was hurting for you and depressed at the same time reading this Kelly. The more I read about other docs just further ensures me that I do have a decent one. I don’t think the docs like to hear that the meds are NOT helping and many times rather that believe the patient, just excuse it as the patient didn’t understand what I was asking them. We are not stupid.

    Don’t apologize for not having anything funny to say. This is not a laughing matter. Wants you to continue for a year even though it is not helping? My doc changed my meds last year within 4 months of me telling him that the Orencia just wasn’t working. TA … is he serious? I take it occasionally at work on a bad night but as your main line to fight RA? You’ve done nothing to this doc, why is he being an ass to you. You deserve better.

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    • December 29, 2011 at 5:16 pm
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      Thank you for defending my honor. Makes me feel better that you think it was off-base to suggest tylenol. I tried to write an objective list here as a reality check.

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  • January 3, 2012 at 3:41 pm
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    Oh, I’m so sorry, but I did laugh as I read your blog. But it wasn’t the “haha!” kind of laugh; it was the laugh of recognition, of having heard the same absurd questions repeated over and over. I, too, find myself exasperated, frustrated by doctors who think they know the answers before they ask the questions, and, when they are given answers that don’t fit or are unexpected, they scowl, disconnect, and the appointment ends with, “l’ll see you in three months.” No, I don’t think so. That was rheumatologist number three. In the search for a new doc, I was refused by three others. One office was actually pretty clear about not wanting to tread anyone’s toes.

    Enter number four, a sole practitioner in a small, modest office decorated with photographs he took in his down time. Culture shock after the last three. This gentle soul reviewed seven plus years of medical reports from a half a dozen difference docs with varying specialities, records from the three priors, and a four inch thick history from my primary who has been saying “RA” for nearly eight years. He took me on.

    Recently, number four said to me, “you sure have a lot of negatives,” as he reviewed my latest round of blood work. Afraid that I may have misinterpreted what he was saying, he quickly added, “tests.” Then he smiled, and so did I.

    This is all I want in a rheumatologist: someone who can think outside of the box, beyond a rigid definition; someone who is willing to try reasonable treatments for a reasonable period of time to see if we are making progress; a doctor who knows when to abandon a drug and move on; a physician who does more than listens–he hears. Number four is all of this and more, and I am grateful, very grateful.
    I wish you well in your search. As you have told your readers, it takes time, but don’t compromise.

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    • January 3, 2012 at 3:59 pm
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      YAY, Jeanne!! All we want is reasonable care.

      Thank you so much for taking time to post. I feel validated – I know I didn’t do anything wrong, but being dismissed repeatedly with the “scowl, disconnect, and the appointment ends with, “l’ll see you in three months.” can make you want to quit and doubt yourself.

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  • January 3, 2012 at 8:58 pm
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    Kelly, I felt I had to respond to your post. I was diagnosed with RA four years ago after both knees swelled up to the point of me having to use a cane, sometimes a walker, with nothing relieving the inflammation except high doses of prednisone. My very conventional rheumatologist prescribed methotrexate and then first humira and then enbrel. The inflammation in my knees was intractable – the only thing that would partially relieve it was prednisone in doses of 20-30 mg per day. When I tapered down to below 15 mg a day, the inflammation increased again to the point where I was barely functional. I made it to work but I remember crying while driving because the pain in my knees was so bad. I should also mention that I had no other symptoms. This cycle went on for two years. Doing the most basic things was, at times, impossible and there was never a single day when i did not feel if not disabled, then on the verge of it. I read a lot about RA, of course, and repeatedly asked my rheumatologist about the possibility of knee synovectomies. He repeatedly said I was not a candidate, though based on my research, it seemed as if I would be a perfect candidate. Instead, he referred me multiple times for physical therapy, which, as I’m sure you can guess, did nothing. I was even measured for knee braces – thankfully I never followed through as that would have been entirely a waste. Instead, after one particularly bad episode where I could not walk ( which again was addressed by upping my prednisone) I made an appointment with a rheumatologist at the Johns Hopkins Arthritis Clinic (I am lucky to live in Maryland). It was not at the first visit, but eventually my Hopkins rheumatologist referred my to an orthopedic surgeon to be evaluated for knee synovectomies. The rheumatologist made a point of telling me that he rarely recommended surgery but he recommended it in my case because nothing was addressing my intractable knee inflammation. So, bottom line – it’s now 4 years after my diagnosis and I’ve had two knee replacements, which, by definition, also involve removing the synovial lining. Unfortunately, since my first knee replacement, I’ve had symptoms elsewhere – shoulders, wrists, and hands, especially. I’ve been on cimzia for going on two years, which, now that my knee inflammation has been addressed, controls the other symptoms pretty well, sometimes I feel almost back to my old self. I’ve recently joined a gym and have had some sessions with a trainer and have taken some Pilates and yoga classes and am able to walk several miles on the treadmill – things I thought I would never be able to do again. If not for the knee replacements I believe I would be totally disabled. Based on my experience, if you are having severe knee issues, I would recommend you get evaluated for synovectomy or knee replacements. In addition, I believe seeing the rheumatologist at a major teaching/research hospital was a lot more beneficial than seeing my very conventional local rheumatologist. Every Inez’s experience is different of course, But I wanted to pass on my experience. Cynthia

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  • January 3, 2012 at 10:54 pm
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    I know this comment is way late, I am behind on everything. I’m sorry about your appt with the rheum doc, but I’m not at all surprised. I have really and truly given up on them. My doc says I’m in remission, although I have a daily fever. According to what I’ve read, that excludes remission in the acr criteria. He reduced my mtx to 4 pills a week and put me on savella, saying it’s my fibro that I’m feeling. Oops, wait, you never informed me I had fibro! Oh well, I knew that’s what he thought of my joint pain all along. I have been taking it a month now and nothing has changed. I will keep doing what he says though, just in case it will make me feel better. Unbelievably I have come to believe that I have fibro too, never thought I’d see the day. I’m sorry you have to have a year full of poison pumped into you that doesn’t seem to do any good.

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  • January 4, 2012 at 1:58 pm
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    Hi Kelly,
    Just catching up after a LOOOOOONG Autumn. I so wish that you could benefit from your own website. I look forward to the RPF site posting a list of doctors which we’ve recommended ourselves; after all, who better to trust than another patient who follows rawarrior.com? My first rheum doc is still my rheum doc; we don’t always agree about terminology, but she agrees that not everything is visible to the naked eye. After my Dad’s death (pulmonary fibrosis, in Sept), I asked her what “we” were going to do to make sure I didn’t suffer the way he did. She immediately ordered xrays (I was due for my yearly xrays of hands/feet,but now we’ll add lungs every year, as well). That is comforting to a patient who fears her disease even more now that her dad died from it.
    I do understand your reluctance to post personal events and feelings, especially in such a huge forum. But I think that your failure to find good rheumatological care is important for everyone to know about. And I come to this website for comfort, knowledge, understanding and a sense of belonging; why shouldn’t you?
    Happy new year, Kelly. I hope it brings lots of happiness your way.
    Jeanne

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  • February 9, 2012 at 8:44 am
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    Tylenol? Seriously? I’m sorry, but you’re hopefully still continuing your search for a better doctor, right?

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    • February 9, 2012 at 9:22 am
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      I don’t know what I’ll do Gina. It’s so hard to not just give up. I want it things to be “good” and somehow feel pressured to go tomorrow & give the doc 1 more chance or something – like I feel it’s me who failed if I don’t go or someone will judge me for quitting. Looking through what was said or not said or done at the appointment – there is really little (zero?) hope that this dr could help me at all.

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  • February 9, 2012 at 9:38 am
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    Kelly, you can give up on a doctor without giving up on the fight. I’d say that, for many of us, giving up on certain doctors and finding another one is a big part of the fight. I know you’ve had more than your fair share, and I guess it won’t hurt to give him another try if you want, but it seemed like things are going nowhere with him, and that was NOT your fault. You are not a noob, and did not ask to be treated as one. But if it helps you quit him by giving him another chance to fail, then so be it, and don’t you wish we had one of those number machines, so you could just call out the next number, and the doctor with that number would step up and try out to see if he gets the part? lol. Just please don’t give up. We’re all behind you, and so are your kids. You’re kind of obligated not to give up. No pressure!!! 🙂

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  • February 9, 2012 at 11:44 am
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    Sorry to hear you had such a disappointing appointment. Rheumatlogists are definitely a hit or miss. I don’t know if you’ve ever considered the Mayo Clinic in Jacksonville or how far you are from there, but I SERIOUSLY suggest it. The rheumatologist I saw was absolutely incredible and looked at the whole picture, did clinical testing outside of the typical ESR/CRP, a very thorough exam, and spent over an hour just going over my symptoms and discussing each and every one– truly an amazing appointment and very easy to talk to. I’d be happy to send you his information if you think it might be worth looking into. Sending positive thoughts/prayers your way! best of luck.

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  • March 7, 2012 at 9:37 am
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    I’m new to this website but totally understand the frustration and agony you’re going through. I came to the end of the RA treatment merry-go-round last year AND my rheum doc retired so I’m dangling in limbo without any treatment save the stupid Tylenol (which causes more trouble than not). What to do and where to turn? I, too, have been searching for a clinical trial for anything that may help. My xrays do not show enough bone damage to qualify for disability yet I can’t stand for more than an hour without excrutiating hip pain and my hands, while not obviously mangled, are not able to do what I generally need from them on any given day. Inflamation keeps me feeling awful and irritated all day. Keep fighting and letting everyone know what’s what out there. Hopefully something new is just around the corner.

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    • March 7, 2012 at 11:53 am
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      Hi Michelle. It’s good to meet you.
      You describe our battle so perfectly. We could do more with a treatment that WORKs but too few of us have that. The focus on bone erosion or obvious deformity can prevent us from getting the help we need unless we find Dr. Awesome whether it’s pain control, aggressive disease treatment, disability filing, or whatever. These are the reasons I’m fighting for greater awareness of the disease, so we can get better treatments and research – not as some believe, just for our getting sympathy.
      I hope many will join us in that also via http://rheum4us.org

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  • May 15, 2012 at 10:47 pm
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    The ideal is from the TICORA study which shows the benefits of tight control http://www.ncbi.nlm.nih.gov/pubmed/15262104

    I know it’s old but I totally believe it’s true. Your last rheumy sounds way too laissez faire. I have not read about biologics stopping damage even if they don’t make you feel better. It would be nice if he’s right

    Annette

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  • November 26, 2012 at 8:16 am
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    Hi, I know this is an old post, but it very encouraging for me. The one rheumatologist I went to see for a second opinion, didn’t tell me, but told the referring doctor that it was all in my head and that I needed strong anti depressants. If I had the energy or the inclination, I would send her a copy of the X-rays and the MRI to show her exactly how much of it is in my head… I still remember sitting in her office watching how she could barely restrain herself from laughing out loud at me. Vindication is empty as I do have RA and I am in pain, so no one gets the last laugh, but we could’ve started treatment a lot earlier and maybe the current drug regime would be working better.
    My current rheumatologist says that very few doctors actually listen to their patients… More telling than we can imagine!!

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    • November 26, 2012 at 8:29 am
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      Hi Sharon,
      Nope, no post is old. They are read & commented all the time.
      Your current rheum doc sounds like a gem. It’s more than most “can imagine,” but I hear the stories all day long – even numerous emails from physicians or nurses with the disease who were likewise mistreated because the ability to test & recognize disease activity is so absent in many practitioners.
      You’re so right that vindication is empty – I never wrote about the second visit to this Dr. Tylenol – and a conclusion. I did bring in scans & dr notes of exams & there was a sheepish admission that I must have some inflammation. It does me no good though to have a dr who knows so little and is so confused about what is right. This dr told me to continue a clinical trial that put myself at some risk whether I respond to the drug or not “for the good of humanity.”

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  • November 28, 2012 at 12:14 am
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    I dont know Im in pain all the time..Somedays is worst then others. Maybe because I was diaganoised with RA very late. The Drs. thoughts I had MS. My hands are like stiff boards somedays and just in pain all the time. Im on Humira and Methotrixate and some other meds I cant pronounce. Somedays I just want to say forget it, Im going off of everything. But when I read your articles and what can happen I worry about this all the time. I go to exercise and forget it after 10 min. Im so tired. IDK I keep the faith as much as I can and keep moving as best as I can. Any suggestions on Exercise?

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  • December 6, 2012 at 9:45 pm
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    I wish you were near. I met a wonderful Rheum Dr who was teaching med students today and was full of advice. So now I have met 2 Drs who would be on my list after my Dr retires. I hope that doesn’t happen for a long while though.

    My friend in the UK sees the empathic Dr Dishy but her hips are a severe limiting factor in her life. Empathy and good treatment should get you walking better no matter what your age.
    Another friend your age (I am guessing based on your kids apparent ages) has a mystery illness and is already worried about ageism. It’s a tough problem for anyone and I hate to hear that you too, with all your contacts, still can’t find the perfect rheum Dr

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    • December 6, 2012 at 11:13 pm
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      Annette, I have found some pretty wonderful ones, but they end up being friends or colleagues and I have kept my own personal health pretty solidly out of the conversation. May not be the best decision in the long run. I may travel to see someone else soon – it’s hard to keep on with that. At least I know what patients feel when they write me their woes.

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  • December 6, 2012 at 11:49 pm
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    Kelly, I don’t think any of us want you to suffer yourself so that you know more about our woes. That’s just wrong – we want you healthy. So good luck with your search.
    I hear so many experiences that are negative or really difficult that I am catching the bug. I have to stop being critical in some areas

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  • January 9, 2013 at 8:41 pm
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    I have already tried humira, simponi, remicade, orencia and now my dr wants me to take rituxan. I am so scared because the side effects of Orencia were so horrible I looked to the day it would wear off. 6 months would be a Long time! Thank you Kelly.

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    • January 9, 2013 at 10:27 pm
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      Hi Patricia, that’s a long list. It makes me tired to think of it. I hear you.

      Just to be clear, I’m totally honest about what I go through with these meds and docs, even though I obviously don’t post every single detail. And I try to make sure it’s clear that our immune systems are unique in some ways. We will not all react the same ways & at this time, there’s no way to predict. It’s completely YOUR decision. The doctor does not have to live with the risks of side effects or anything else – only you do. But please don’t assume that any bad thing that happened to me would necessarily happen to you.

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  • May 9, 2013 at 6:29 am
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    Tylenol, now that is a good laugh. I had a rhuemie for 10 years and he never once did any x-rays or other imaging. I had finally got to the point that I felt like I was having a groundhog day each time I went for a visit. One day he came in the room and he was oviously having a bad day, and within the next few moments, he took it out on me. I had several deaths in my family within 6 weeks of each other and I do admit that I did not get my labs done that month. He showed no compassion for my situation. He was even treating my mother who had just lost her husband, my father. I was supposed to get my flu shot that day but he dismissed me like I was a child in school. I was so upset and my stress level hit the fan. That day I decided to take control of this situation. I researched Ra docs and found one that was reccommend by a coworkers mother. That was the best decision I have ever made. One my first visit with her, she talked to me about my concerns and where I thought I should be with my treatment. she did labs, all kinds of x-rays and I will have a bone density test next month. She has done more for me in one month than my old doc did in ten years. Someitmes the old way of treating us is not the best way anymore. Keep the search up to find the ra doc that works for you and not against you.

    Reply
  • May 9, 2013 at 9:10 am
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    My rheumatologist suddenly retired last week due to medical reasons-I felt so abandoned! Luckily a friend of a friend recommended a wonderful dr. for me. She took me right away and I feel like she has truly saved me! She changed my meds, took me off Arava due to small fiber neuropathy-checking to see if the Arava is the cause-and will be starting me on Orencia when it gets approved.

    Keep searching, there is always someone out there that is more knowledgeable.

    Tylenol? Really?????

    Reply
    • May 9, 2013 at 9:13 am
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      I hope the Orencia works well for you Paula. It makes such a difference with a chronic disease to have a doctor you can trust.

      Reply
  • April 15, 2014 at 12:44 am
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    Kelly you should check with your dr there is some program from the drug company actemra that help pay for the medicine. Still waiting for the bill not sure how bad that will be? Explained to my doctor how we have to be able to afford these things and they seemed shocked on I would have to quit if can’t afford the meds it seems a foreign concept. My doctor applied for the help and from what I understand of it it’s a cc that actemra will pay a portion. Good luck hope you are doing ok

    Reply
  • March 27, 2015 at 12:43 am
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    Your words help me understand my emotions. Thank you for everything that you have done and do. When the day comes for you to lay down the torch, I pray that we are blessed with an advocate one tenth as remarkable as you.

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  • February 1, 2016 at 11:00 am
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    Well Kelly, I abruptly stopped reading at one point in the blog and settled down a bit before I carried on. If the doctor had suggested Tylenol Arthritis to me I would have said, “Are you bloody well kidding me?” First of all, I have a huge problem with Tylenol marketing these as specifically for arthritis of any sort. If you look at the package ingredients, the only thing they contain is Acetaminophen. Yes, that’s all! 625mg of it. And they have the nerve to charge outrageous prices because it’s for arthritis. Take 3 of the regular old Tylenol and you’ve essentially got the same thing.
    Acetaminophen is is the most common cause of acute liver failure in the U.S.
    In acute liver failure, the organ fails quickly, sometimes in 48 hours, as opposed to the more usual forms of liver failure, caused by disease or alcoholism, which can take years to develop.

    If you were to take the amount of acetaminophen suggested on the package, you would be taking 3900mg per day. That might be fine for some people, however, many of us with RD are taxing our liver with the plethora of drugs we already take.

    Okay now that my rant about that is done, I must say that I am appalled that you are not prescribed proper pain medication! I know the pain and I know it is cruel for them to not address this issue.

    I think he gets the name Dr. Tylenol Arthritis and you need to find a doctor who will take you and your health concerns seriously. If you were in Ontario, Canada I wouldn’t hesitate to recommend mine. Take care Kelly

    Reply
    • February 1, 2016 at 12:51 pm
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      Hi Kathy,

      I agree about the dangers of tylenol / acetaminophen and have written about those same points. Here’s one place http://www.rawarrior.com/fda-limits-acetaminophen-in-prescription-pain-medicine/
      It’s also appalling to think there are rheumatology orgs across the world now recommending that. I have a friend in drug development who explained to me why it would probably not be approved by our FDA in the US today. Too many people do not respond because the drug is taken up quickly by the liver.
      I saw your tweet & I’ll tell you I still haven’t found a rheumatologist who knows more than Dr. Tylenol (who knows less than my kids, seriously). I know plenty of better rheumatologists as an advocate / researcher – just not as a patient.

      Reply

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