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34 Responses to “Textbook Rheumatoid Arthritis: Patient Input Will Replace It”

    1. Linda says:

      Okay so for the last 6-8 weeks my hands and wrists have been so swollen I can hardly hold a coffee cup. This is new to me because my RA has always affected my lower extremities! I have been on Humira, Cymzia and now trying Orencia. I am thinking of changing doctors because every time I go he says okay lets change medicines and I’ll see you in 2 months. I am miserable and just found out that the Orencia takes a while before you notice any type of relief. I am a librarian and this seriously interferes with my ability to do my job. Is it possible I could have something else going on? I am one frustrated female!

    2. Annette says:

      There was a lot of consensus in the advice that Eric got. It was very interesting to read all of those informed viewpoints.

      Oh and don’t forget the “learned helplessness” in your list of characteristics of RAD patients – more like learned hopelessness

    3. Tanya says:

      Throughout my life I have been the atypical. from the moment I was born 2 months and not expected to survive, I have defied the odds in good ways and bad. In fact, I had never heard about RA until I saw a poster about the benefits of breast feeding while in a lactation room at work. The poster claimed that breast feeding reduced the risk of RA for the mom by 70%. Well, hello, I am the 30%, diagnosed with RA while nursing my first son. Still today, if a doctor tells me, well this works 90% of the time, I know I will be in that 10% it doesn’t work for. I hope we can change the definition of RA and I hope doctors take the time to listen more empathetically to what patients are saying. I wish there were more caring rheumatologists who don’t just dismiss our opinions as overreacting or hypochondria. I am not one to complain unless it’s bad. I fight through the stiffness and pain to take care of my family until my joints force me to rest. I appreciate this online community, otherwise I would not get the support I need to stay educated and at least know what others are going through. Thanks Kelly for all you do for our cause!

    4. Susan says:

      Your articles always leave me feeling empowered and informed. I consistently hear from my Rheumatologist that because i’m seronegative, that somehow makes everything less valid, and less serious. That i’m just old and fat, that i just need to get out more. He never once asked what my activity level was before symptoms, never once asked what i push myself to do now, and believes that RA does not cause pain. I’ve suggested this website to him, and gotten a very cold response, but at my last visit, the visiting dr (maybe a student?) was familiar with it. My hope is the new crop of doctors will take the time to educate themselves instead of believing that what always was… is always right.

      • Jenn says:

        Is there any way for you to keep seeing the visiting doctor??

        • Susan says:

          I wish i could! He seems to have different ones in each time. The last one actually fought for me because he kept insisting there was no swelling and i couldn’t be in pain. They argued in the hall Nd i heard her say “this woman is swollen and in pain, it’s been 8 months on MTX so it’s obviously not working. If you won’t help her, i’ll take it higher” they came in and he added Arava to my MTX. I could have hugged her!

    5. Cari-Lynn Thiessen says:

      two years ago I began having pain in my right knee that slowly went from slight pain to pain so severe I could hardly walk, so I was diagnosed with a torn ligament. They did the scope and found the ligaments to be fine but the synovium was shredded and the fluid was eating into my bones. They cleaned it out and told be to live life the best I can and to get a cane. Two months later I slowly and very painfully began to walk with a forearm crutch. However this was short lived. Within three weeks I was having severe pain in my hip, knees, and shoulder. At that point I was forced to quit nursing school as I could no longer walk. That was one year and seven months ago! Since then I have been completely confined to laying flat on my back, while every single joint in my body was rapidly taken over by pain and inflammation. My rheumatologist as tried every blood test under the moon, bone scans, and x-rays. I was diagnosed with seronegative rheumatoid arthritis. I have tried everything from sulphasalazine, to methotrexate, to Enbrel, to simponi. Along with numerous vitamins and other pilss that are supposed to help with inflammation. Not a single drug has given me any form of relief and I continue to get worse. I have finally been referred to get a second opinion. For the last year and a half I have not been able to dress, bathe, or feed myself. I am in bed 24/7 unless to go to the bathroom where I need help to painfully get me into my wheelchair. All of this makes me wonder if the doctors have it wrong. I can’t lay here for another year and a half waiting for meds to work. Do you have any advice for me?

    6. […] Textbook Rheumatoid Arthritis: Patient Input Will Replace It. […]

    7. Megan says:

      I went through this for 5 years. Even now I don’t feel like my doc is listening so I am going to try a new doctor on the 17th

      • Jenn says:

        Good for you. I have app with new and current doc this next week. Yikes! I hope the new one listens to me…. I hope your new one listens to you and is a great fit.

    8. sharon broyles says:

      CRP!?! Holy crap! Mine was 16 10 yrs. ago and the dr. was very alarmed. She told me to double my daily aspirin intake. This was her ONLY response, despite yrs. before that being diagnosed with chronic fatigue syndrome, then CFIDS (chronic fatigue immune deficiency syndrome/fibromyalgia), then non-specific immune disease. (I do take nortryptoline for pain & sleeplessness. ‘Saved my life!) Later a rheumy would not diagnose RA b/c hand x-ray(only 1 he took) showed no symptoms. Now, I have “chronic degenerative bone disease” in both feet, says my family dr. after feet x-rayed. Fancy term for plain arthritis, I ask. Affirmative. More recently, another rhuemy previously tried steroids to alleviate hip & overall pain. Dramatic success led him to prescribe plaquinil for long term. Unfortunately, I had horrible reaction and couldn’t continue to take it. I haven’t been back to rheumy since, about 3-4 yrs. ago. Very discouraged. Both hips now very bad. Hips, back, & neck x-rayed 12 or so yrs. ago, and told I had osteo in both hips, “degenerative bone disease” (dr.’s words) in neck, and pinched nerve in back. ‘Really sounds worse than it feels. Hips are only thing that bother me. When I’m overtired, over fatigued, over stressed, or over-anything, the backs of my hands will hurt. Oh, and …. I have lost strength in my hands, especially my thumbs. Also, I can no longer rely on my wrists for stability. They immediately give out. None of these hand symptoms are recent, but after x-ray 3-4 yrs. ago, rhuemy dismissed any disease in hands.
      Any comments would be most welcome!

      • Jenn says:

        Obviously I wouldn’t know if you have osteo or rheumatoid. You would need new xrays. I think you should try a new rheumie and get xrays. To be honest rheumatoid does not sound worse than it feels. Hand therapy would probably be of help to you as well. Do pursue it. Some people do get really bad osteo and if that is the case you would need to get the pain under control and may need to consider joint replacements. If it is rheumatoid you would need much stronger drugs to try and stop future damage. And you can have both. At the very least see your primary and get xrays. Good luck!

      • Jenn says:

        Thank you, Kelly! Fabulous post and right on as always. I think the most upsetting thing of all of this is finding a good doctor. Without one it’s impossible to even start on getting the care you need.

    9. Nonny says:

      Hi Kelly Young!! :( for being MIA for so long…but I’m back and very sad to read all these post! Amy, I have a daughter who has also has been through the ringer with RA physicians. I have been battling this issue for 13 years, I have been told that my daughter is a liar and that her pain is not really, and if it is its not as bad as she says it is :( Every appt. was the same and a complete waste of my time, on exam they would tell me her joints are unremarkable, no signs of swelling or stiffness and like your daughter they also told us she is hyper flexible, her labs are remarkable and that she’s absolutely fine. One specific appt sticks out in my mind, my daughter had an appt. w/ the rheumy, he looked at all her joints, and pressed forcefully on her joints, as tears are rolling down her face, she told him to be more gentle and he said ur fingers are not that bad and continued to push on them, that was the same day he told me I needed to put her in Behavioral intervention because her pain should not be that intense while on meds! I chimmed in as the protective momma bear, looked @ him in the face and said ” excuse me doc! Can I ask you a ?, do you have JRA/RA? His reply, “NO I DON’T, me , well how the hell do you know how bad her pain should be if you don’t have RA??” His response was, well my other patients don’t complain like she does, hence the reason why she needs behavioral intervention” I looked @ him with tears in my eyes and said to him you did the MRI on her hips and told me her imaging was very abnormal :( he said yes and before he could go on any longer I took my daughter by the hand and walked out of the office. My daughter and I had a heart to heart conversation and she asked why NO ONE BELIVES US…that when I began my search for a NEW RHEUMATOID DOCTOR…I have has to jumps through hoops and be the BEST ADVOCATE for my child. Amy if you would like to converse here’s my email address I will help and try to guide you in any and all possible ways I know how!! I feel your pain and no one should have to live life with PAIN.

    10. Maika says:

      Reading these posts makes my heart hurt. I feel so blessed to have found two good Rheumatologists. We should have some data base where we can share info about good and bad experiences with our doctors. Not only have my doctors reaffirmed my symptoms but were amazed at my level of functioning in spite of my inflammation. If a doctor doesn’t work for you please fire them immediately and get a good one. I’ve had good luck on the MD review sites, but would love one that is specifically for Rheumatologists.

      • thank you for your encouragement to patients to not give up! I’d love to add your doctors to the resource we are building if you’d like to send me their names by email – kelly at rawarrior.com.

    11. mj says:

      My dr. is middle of the road. I see a visiting fellow, and several other established drs, so I’ve been able to witness the personality of 5 or 6 drs. While all seem to be of the polite sort, they generally seem to subscribe to the old way of rating disease activity, and tell me that I’m atypical. I have gently and relentlessly pushed forward and just today did my first Enbrel shot! Fingers Crossed! I have opted for gentle patient guidance, and never do I mention that I read much online, I just say in an innocent way that “ive heard somewhere….” It’s really strange actually, feeling like you have more of an idea of whats going on than the dr. I admire the dr’s that work in step with their patients, how it should be done. How on earth can it change? This stuff needs to start in their med school training, not after they get out into the feild.. Sometimes I’m just afraid that a big part is they really DON’T know what is going on. My primary said “those are the drs we send you to when the rest of us can’t figure out whats going on”
      One of the most liberating things I’ve done has been to go wheat free. Did it for 5 weeks (till I “fell off” for holidays, back on now) It made a huge difference for me in my hand swelling. Like a switch shut off. I have no illusions about it being a cure, I’m still on mtx and just started Enbrel, but it sure brought me out of the hopelss feelings I was having.., the downward mental spiral.. Furthermore, it was the first thing that gave ME a feeling of control in this whole process. I say that if they can’t figure out the basics of this disease, how can they say that nutrition/diet can’t influence the disease activity in some people.

    12. Vi D says:

      Nonny has been her daughter’s advocate for many years, and now even though Kaitlyn is approaching adulthood (almost 16), Nonny is still in that role–and always will be! All RA patients and their caretakers have to continue to be their own doctors sometime and not give up when they hit these terrible bumps in the road! Kelly and Nonny and many others have learned some helpful ways to support their own situation or their child’s situation ( from reading comments on Kelly’s blog, we know that many patients learn more from Kelly’s blog than from the early doctors who were contacted!) In the early days of this disease, Nonny never took photos of her child’s swollen fingers and knees etc, but now that is one of the new ways the doctor can see what had taken place between appts.—so, if Kaitlyn looks “normal” during an appt., photos show the not-so-normal days! In addition to textbook info, many (not all, of course!) rheumatologists need to learn a bit more about their field through patients’ feedback, and only in that way will they truly get a real education on the effects of this disease. We can help all those patients in need by giving more feedback to the right sources, and contributing info on your experiences to Kelly’s blog is a great place to start. Kelly is a fantastic RA advocate, and we are so, so fortunate to have her as a spokesperson for this disease!

    13. Helen says:

      Hi all. I really appreciated Kelly’s original post here on the topic of textbook RA and others’ comments. Along those lines, I have written a rough draft article about the 2012 ACR Guidelines regarding disease activity that I sent to the Rheumatoid Patient Foundation for consideration. From what I can tell, there are a lot of gaps in clinical practice and patients’ experience as Kelly so clearly outlined. There is far too much “he-said-she-said” subjective opinions about what the disease is and what constitutes disease activity. The disease needs to be clearly defined. It isn’t just in the joints and to only rely on counting which joints are swollen and/or tender (but mostly swollen) to determine disease activity + CRP/ ESR is simply outdated and doesn’t match patient experience. There ARE objectives tools such as muscoskeletal ultrasound, MRIs, Vectra blood tests that I believe rheumatologists should be STRONGLY encouraged and/or mandated to use routinely to help support their OPINIONS about if the disease is active. I loved the article Kelly pointed to about uncoupling disease activity from other damage (and not just damage to joints). We need to press on in demanding scientifically-based, rigorous standards of medical care so that people are not made to feel crazy and their integrity is not continually questioned. When rheumatologists don’t have answers or don’t want to order tests, they should abide by their ACR code of ethics to refer patients to other specialists who can add to effective care (i.e. neurologists, orthopedic specialists, immunologists, physiatrists, respirologists). I hope the RPF will be able to work collaboratively with the ACR to address the gaps between the current state of rheumatology care and research and patient experience.

    14. Joan says:

      I am 17 and through out the part few years I have been tested for RF a number of times because I had knee pain and lost range or motion for no apparent reason but was never sent to a rheumatologist until recently, because I started having pain in other joints as well. The reason my pediatrician never sent me to a rheumatologist at age 10 when this started? Because she said that I didn’t have JRA because I only had one joint involved, and it was my knee, not a small joint. As I am learning now I probably had textbook JRA, but none of my doctors knew what textbook JRA looked like, only adult onset RA. So while the textbook definition defiantly needs to be change, many doctors don’t even look for the right signs.

    15. Shannon Christman says:

      My doctor has diagnosed me with both RD and Fibromyalgia for the very reason that I think someone in their comment posted. My pain isn’t completely controlled with Methotrexate.

    16. Ruth B says:

      I have been reading this site fr months and just had to comment. My rheumatologist (also known as my “drug dealer” since that is all she seems good for) once told me she thought I might be depressed. My response? “Ya think?” Who wouldn’t be depressed when they are in pain, can’t move well, can’t sleep well and are worried the drugs that might make things tolerable could kill them? I’ve had this disease for 42 years. There are times it is easier to handle than other times. But it never “goes away”….contrary to my aforementioned “drug dealer”. Thanks for the space to vent!

      • Hi Ruth, thanks for speaking up. I’ve heard of lots of nicknames for a doc & that one’s funny. The one I always used to use on Facebook that caught on pretty much is “wizard” – as in the Wizard of Oz.

        No, the disease “goes away” whether naturally or with the drugs in VERY few patients, yet the docs are taught that it does and that we are exaggerating. The same old archetypes are passed down in medical school. I know because I’ve heard it from professors & newly minted doctors. We have several doctors who are rheum disease patients who have spoken out loudly on how little the medical profession understands this disease.

    17. Anne says:

      I’ve never had a textbook case of anything, which includes this current beast- some sort of sero-negative something-or-another inflammatory, bone-eatin’, joint-swellin’, crazy-makin’ arthritis. I just got home from getting fired by my rheumatologist because I have had new joint problems crop up over the last year despite taking a combination of MTX, prednisone, and a couple of biologics. Many things are better, others are worse, and I guess that’s just not acceptable behavior. (Is everyone else here a good little patient who gets back to new?) Before I go elsewhere, I have to figure out who has a different textbook. That’s the guy I need!

      • there are docs who think outside the box! that’s the best option. But we also need to make a new “textbook” that makes sense to patients who actually live with the disease.

        And no, I haven’t met very many people who are “good as new” with the treatments – I think our survey said 93% Do NOT have all their symptoms relieved by tx.

        • Helen says:

          Hi Anne. What reason did your rheumatologist give for discontinuing with you?

          • Anne says:

            That would be because I’m still reporting new symptoms even though I’m on meds and “have no visible swelling.” (Excuuuse me? My hands have never looked like this, I haven’t been able to get my wedding ring on for two years, one toe is twice the size of its counterpart, one thumb is visibly at least 25% wider than the other, I’ve had to let my watch band out a notch . . .) The recommendation was to go see someone at a teaching hospital an hour and a half away IF they will deign to give me an appointment, which I should have a “yes” or “no” on by the end of the month.

            I have liked this doctor, but feel this is a bit premature. I’ve only had one set of x-rays, hands only; one set of diagnostic blood tests- RF, anti-CCP, ANA, etc., all about a year ago; no Vectra, MRI, ultrasound, etc.

            • Helen says:

              Hi Anne. Thanks for clarifying. I just sent an email to my friend and put as a subject line “home from doctor’s appointment in tears”. I am SO THANKFUL to Kelly for providing a forum where we can see that the practice of rheumatology is often far behind the research and patient experience. Stay strong, Anne. You have a lot of support from others. Here’s what I emailed my friend.

              My doctor read the most recent report from my rheumatologist and said that it looks like he is saying I have a pain disorder and the RA isn’t really that concerning. He asked me to defend why my RA is a concern to me now and why I think so. I was floored. I’m so thankful to have an online community of people with RA who are experiencing very similar problems with their doctors. After drying my tears at home, I read some of the recent online posts (Ken’s and comments and now yours) and the patient and family stories are the same as what I’m experiencing. Usually, people eventually switch to a new rheumatologist.

              I had to really stand my ground and quote a lot of research to get on an equal footing with my GP. He admitted he has a very basic knowledge of RA and he was very respectful of my perspective, experience and research. He let me know that the rheumatologists here are “old school” and with socialized medicine, their approach tends to be a one-size-fits-all so none of the tests, such as ultrasounds, seem to be used routinely. There are two blood markers for inflammation (CRP and ESR) that rheumatologist were trained to evaluate. If the values were sufficiently high and they could detect joints they thought were inflammed, then the disease was said to be active. If not, then the patient was looked at skeptically. This is no longer consistent with what research is showing or patient experience. There’s ample research to show why the thinking about inflammation is erroneous, however, some rheumatologists are using this old school approach.

              The bottom line is that people with severe RA tend to have joints, ligaments, and muscles that deteriorate over time with significant pain regardless of what the inflammation markers seem to be doing at any given point in time. The cervical spine is often involved. The involvement of other organs and reactions to medications also contribute to early death. So, patients are getting fed up with being disbelieved or having their symptoms minimized or ascribed to other factors. In the old days, a lot of people just suffered very quietly because the disease was so misunderstood and people were isolated.

              My GP did agree that we need a second opinion from another rheumatologist but an appointment will likely be months if not a year. My health is important and I will not just sit by idle without trying all I can. I’m not satisfied to sit on opioids for a “pain disorder” along with the RA meds. I am glad I have read as voraciously as I have about RA. I don’t want to just deteriorate into disability or not get proper treatment.

              So, Anne and all….. we need to continue to do all we can to have our integrity respected and to press for good medical answers to this debilitating and misunderstood disease. Keep us posted !

    18. Jimmy says:

      Hi Kelly,
      I was reading your blogs and came across a comment you said about sending you information about good doctors. I would like for you to consider adding my wife’s doctor to your database. Her name is Dr. Martha Aguilar and below is here contact information in Houston. What I like about this doctor is that she was the one that quickly diagnosed my wife and put her on a regiment that controlled RA. After a year she had X-Rays done on her hands and feet and they did not show any deterioration from the original X-Rays. It was the MRI’s that she did that confirmed she had RA but due to heath care issues, it is not something that the doctor can perform regularly. She is on Enbrel and methotrexate 1 year) and they are diagnosing her with psoriatic arthritis because of the psoriasis showing up sporadically in her elbows and her back pains.
      UT Physicians Rheumatology
      6410 Fannin St Suite 450
      Houston, TX 77030
      713 486-3100
      She has RA and her son has juvenile RA. With that said, she can relate what my wife is going through (literally) and she believes is aggressive treatments to control RA which through the grace of God is controlling the RA for the most part.
      Take care and thank you again for all what you are doing! You are my peace and mind on how to be there for my lovely bride!

    19. Tonisa says:

      I read things here are realize how lucky I am with my care. Because I am a veteran, I get care at the San Francisco Veterans Administration Medical Center Rheumatology Clinic. Dr. David Woofsy is head of the Clinic. It is connected to UCSF Medical Center. I had the same rheumy (she was a Fellow) for 6 years and she left the VA. It was emotionally traumatic to lose Julie (yes I called her by her first name)as a provider. We had a long excellent relationship. My new rheumy is also a Fellow and I have been seeing her for almost a year. We understand each other and so far it has been a good relationship.

      I highly recommend folks get care at a Rheum Clinic in a teaching hospital if possible. More eyes are on your care and they are up to date on all the new treatments. Because I have been at that Clinic for so long I know all the attending docs and fellows(some are permanent at the VA and some fill in from UCSF). I have to say they have always listened to me and we certainly have had some differences of opinion. They all know this is a systemic disease and is not about just joints.

      I certainly am not textbook and it has been a running joke with us. My old rheumy did my CRP and sed rate but they were normal 99.9% of the time and she paid no attention to them…they only elevated (and slightly elevated and only for a short time)when I was off biologics and MTX because of surgery that was RA/DJD related. My current rheumy does not even do them because as she pointed out they are no help to her or me, so why waste the money doing them.

      TNF inhibitors failed me as a class. Humira worked amazingly well for about 2 years and then over time it lost efficacy. I was on it about 6 years. I had L2 to L5 fused and that was DJD/RA related. It was done laproscopically and worked like a charm. I kept flaring in my hands and shoulders plus fatigue/depression. MTX is oral at max weekly dose of 20mg, prednisone is at 10mg daily. We switched to Enbrel and that did not ever work. I did about 14 injections total with an intermission for surgery. I had a left total hip replacement in Nov due to RA/DJD. My rheumy and I agree that TNF inhibitors are lost to me as a class of drugs.

      I had my first Actemra infusion yesterday. It went well except I am still kinda itchy all over, but it’s been very dry and cold here so it could be just dry skin….I can’t use enough lotion. I was given tylenol and benadryl prior to the infusion. My hope is it will not affect my lungs as much as TNF inhibitors did. I have had pneumonia 4 times in the last 2 years and 3 times was in the hospital. My lungs can’t take much more.

      I am so hoping this IL-6 inhibitor will stop this progression. It is now affecting my knees and feet with the knees being inconsistent. Bed covers on my feet will wake me up in the night because of the pain. My hands are changing in front of my eyes. Some days I really hate this but then all of us do feel that way.

      I’m rambling……sorry and thanks for listening

    20. Angie says:

      Jimmy, I was so thrilled you posted the Dr.s info. For one minute I thought I would fly to Texas for an appointment with her! I am in Milwaukee, Wisconsin and would truly appreciate a real Rheumatologist. I am tired. I am in pain daily, I am a self pay- no insurance, and I pay every Dr bill, lab test and x-ray. If anyone has a gem in Wisconsin, please let me know. Thank you Kelly, and every poster – you really support me after every dr visit.

    21. Gretchen says:

      Hey. Don’t know where you are in Wisconsin, but I would highly recommend either Dr. Davidson or his partner in the rheumatology dept. of the Monroe Clinic. Dr. Davidson is marvelous and I have heard very good things about the other rheumy as well.

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