Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment

Rheumatoid Arthritis patients still have symptoms of pain & disability

In a press release posted this week from Rome, the European League against Rheumatism (EULAR) says women with Rheumatoid Arthritis experience Rheumatoid Arthritis symptoms despite treatment. (Link to view non-pdf version of EULAR press release.) The survey of 2,000 Rheumatoid Arthritis patients found a majority experienced ongoing pain and other debilitating symptoms of RA despite disease treatment.

The list of Rheumatoid Arthritis symptoms they experienced is familiar:

87% regularly discussed ongoing pain with healthcare providers
71% of those still working said they were less productive at work
63% experienced daily pain
56% called their RA emotionally distressing
49% wanted additional ways to obtain relief beyond current medications
49% found certain activities more difficult or impossible to do
40% reported feeling depressed much of the time
40% of single respondents said RA made it more difficult to find a partner
24% reported difficulty sleeping
23% had stopped working because of the disease
22% of separated or divorced respondents said the disease played a role in the failure of the relationship

Biologics don’t bring remission of Rheumatoid Arthritis symptoms for most patients

Every day, I see patients asking, “Why does my doctor say I’m doing well, but I still have these problems?” There is an assumption by many, even doctors, that Biologics and DMARDs treat Rheumatoid Arthritis symptoms sufficiently. Not exactly.

According to Medpage Today’s coverage of the EULAR meeting, Dr. Vibeke Strand called some of the findings “very much an eye-opener to me.” Strand “added that, although biologic drugs had clearly made RA treatment more effective, ‘they are not doing as good a job as we’d like to think they could do.’”

EULAR president Dr. Paul Emery said, “The research highlights the complexity of the management of RA , and the pain associated with RA, over and above basic symptom control.”

Last month, I read an article* that discussed the difference between the effectiveness of Biologics in the general RA population and their effectiveness when measured in clinical trials. The treatments are turning out to be less effective in practice than they were in the studies. Is that why Rheumatoid Arthritis patients often wince at advertisements for Biologics that make it appear that we can get our old life back? One recent scientific article says that fewer than half of us do. Other lists about Biologics we’ve seen show a response rate about 40%.  Of course that’s not for remission; it’s only for improvement.

The report presented at EULAR was not a surprise to patients since we already know we take medications to manage RA symptoms that disease treatment does not address. Most RA patients I meet take prednisone, pain killers, anti-depressants, anti-inflammatories, or sleep medicines, or a combination of them.  I’m so glad somebody thought to ask them about it.

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/

70 thoughts on “Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment

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  • June 25, 2010 at 12:47 pm
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    The docs have done a good job in treating my ra but I have yet to find a doc that will treat my pain. Its very frustrating,

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    • June 25, 2010 at 7:30 pm
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      Waynette, it just makes me wonder – if we are treating it so well/ aggressively, then shouldn’t we feel better? I agree it’s frustrating.

      Reply
  • June 25, 2010 at 1:07 pm
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    Dear Kelly,

    Just finished looking through July/August Arthritis Today magazine.
    They have 2 articles dealing with RA———- the first is a photographer who takes pictures of what RA looks like!

    Also——-MISDIAGNOSED—7 signs to look for! WOO HOO!

    Keep up the good work, the message is getting out there!!!!!
    LOTS OF LOVE : )
    Connie

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    • June 25, 2010 at 7:31 pm
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      Thanks, Connie. I knew about the photographer – she’s pretty well known. I’ll have to look at the other one.

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  • June 25, 2010 at 1:36 pm
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    I’ve seen that other article, or one similiar, but am not sure where it was either.

    Thank you Kelly, for doing this post. It is so dang true. I wonder what the docs think about it? They probably think that most of us have depression and/or fibromyalgia and that is the cause of all our pain despite the meds. Yes, I know the fibro dx is controversial. I would love for my doc to truly figure out how many of my joints have RA versus say OA or “just tendonitis/bursitis” or prednisone muscle damage or something else. Then if it’s not any of those, maybe I could accept a dx of depression or fibromyalgia causing the pain and move on from some of the frustration with the shortcomings of treatment.

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    • June 25, 2010 at 7:37 pm
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      Well, if anyone can find it, then we should.

      This new crop of studies seem to be along my own line of thinking so far – that the “leftover” pain means that the RA is still the problem. Even if the joints do have “tendonitis” etc, the RA is the underlying cause of that. I have found that changing rheum docs often changes the perspective on this – in other words, they don’t all view it the same way.

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  • June 25, 2010 at 4:42 pm
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    rheumatoid arthritis clinical trials vs general population results

    This is the Google search I did to see if I could help you. Lots of information that I have not been able to digest, but I hope you find it helpful.

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    • June 25, 2010 at 7:38 pm
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      Jeanne, that’s pretty close to what I was searching. I can’t believe I misplaced that story. 😛 But I’ll keep trying.

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  • June 25, 2010 at 6:31 pm
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    Thank you Kelly once again. You have made another blog post that just hits home. I have been thinking of all these exact things and it’s good to see it in writing. Do you read my mind?? <3

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    • June 25, 2010 at 7:42 pm
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      Hahah, Taf. We have similar experiences – I guess that’s it. And I read your mail. 😉

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  • June 25, 2010 at 8:44 pm
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    I want to print this out and hand it to my new rheum doc if he discounts my pain like at my last visit. I have been doing so well for the last 10ish days, but I know it may change any moment. I hate that uncertainty, it makes you feel like you can’t celebrate the moment or you’ll be tempting fate, and have it yanked away from you again. Wouldn’t it be great to feel better and know you won’t get worse again? Oh, that would be a cure, never mind. No such luxury with RA. You and others have never gotten better, which is really a tragedy. I got off track here. I really wanted to ask how to go about presenting info such as this to a doctor, without offending him?

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    • June 25, 2010 at 9:34 pm
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      Dear Ronda,
      I love that you would want to bring new info to your doc & that you would print my article :heart: But I’m not one to give advice on that since I haven’t always had success w/ getting docs to read an article. LOL :chic: I think it depends on the personality of the doc. I always as them for their opinion, so I’m not telling them “you need to see this.”
      edit: fixing typo: that was: I always ASK them…

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      • June 26, 2010 at 2:10 am
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        Thank you Kelly, it is indeed a touchy subject. I need to get to know him better first and approach the subject carefully if needed. Part of me, you know which one, wants to print em out and say take that and that. :hammer:

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    • June 26, 2010 at 9:44 am
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      I don’t think it’s the same one, but yeah, aren’t there a lot of interesting articles if one cares about this stuff? That one looks good too, so I’ll save it. I wish I could read them all – and remember what I read! 😛

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  • June 26, 2010 at 1:25 pm
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    You know, I’ve been wondering about this, especially because in my work on MyRACentral.com (sorry for the shameless self promotion, but it’s relevant), I see questions and comments from so many people reporting their rheumatologist not treating their pain, either because they “don’t believe in pain killers” (like it was a religion) or “I treat inflammation, not pain” and it always makes me wonder if they are perhaps not fully aware of the consequences of RA. Biologics may show an improvement, may even fully suppress the RA, but, for instance, Biologics don’t address the pain of joint damage, the fatigue caused by this pain or the extra energy required to do things if you have deformities. Unless the drug is given right at the beginning of the disease -and for most people, it can take several years to get diagnosed – and the person responds to it right away – instead of having to figure out by trial and error which medication works best for you – you are going to have some consequences of the disease that will affect your daily activities. Be they opening jars, working full time, dancing, getting dressed, whatever. As well, simply having a chronic disease for which you need treatment, treatment that possibly can stop working any minute, is enough to make anybody anxious and depressed.

    And before I write an entire treatise on this, I’ll get to my point. Which is the following: is fair to expect Biologics to deal with this all of it? It is not the fault of the Biologics that a spouse can’t deal with a chronic illness or that potential partners run screaming for the hills – and by the way, they’re listed at symptoms of the disease? Wouldn’t they more accurately be sort of side effects or consequences of having RA – and I look at the rest of the list and ask myself the same question. Did we expect the Biologics to be a magic wand, something that would miraculously restore us to the happy couple flying a kite on the beach (why is it always a kite on a freakin’ beach…)? The job of the Biologics is to suppress the disease, not to compensate for damage or prejudice.

    Bottom line is this: there has to be two approaches to treating RA: there are the meds and then there is learning to live with it. And whatever money is raised ought to go into both, not just the meds. If anything, this study shows loud and clear that medication alone doesn’t do it.

    sorry for the length. I got carried away. 😉

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    • June 26, 2010 at 2:17 pm
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      yes, & perhaps if it were an actual cure… that would also help. 😉

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  • June 28, 2010 at 10:13 am
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    There are many ways to reduce pain in additon to drugs. They are recommended by our doctors but many of us choose not to try them. They may not be as easy as a pill or produce as dramatic an effect but they do help. Our bodies produce their own natural pain killing endorphins and hormones in response to things like exercise,sex and stress relief techniques for example. Added to the meds these can make a huge difference in your quality of life.

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    • June 28, 2010 at 11:03 am
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      I am a big fan of endorphins too, Joanne. That’s why humor is such a big part of my blog. We should all do our best each day. Unfortunately, whether it’s medical treatment or natural treatment, they do not all work the same on every RA patient because the disease is so heterogeneous.

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    • June 28, 2010 at 5:40 pm
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      I am indeed a fan of those things…who isn’t? But with 5 dr appt’s a month, and much else to deal with just doing chores or planning meals, essential things etc, these are not a very reliable source of pain relief. If I had to go to work, I can’t just say, “well I think I’ll have sex now”, or perhaps, “I think I’ll laugh now”. These things are important and effective, but we must take them where we can get them – we can’t rely on them to work on demand when life’s responsibilities come calling…

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  • June 28, 2010 at 6:05 pm
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    I’ve had a number of dr’s and people tell me recently that I’m not swollen, and treat me as if there’s nothing wrong with me. Truth is, I’m not…..right now. Right now being the key phrase…why is it so hard to accept – even for docs that RA comes and goes as it pleases, and that when it comes, it comes in waves, or should I say tsunamis?

    “Is that why Rheumatoid Arthritis patients often wince at advertisements for Biologics that make it appear that we can get our old life back?”
    Yes! For me at least… I can’t stand the commercials, and there’s a lot of them. The other thing is that I know those commercials cost a shit ton of money (esp with the number of them there are), and guess who ultimately pays for that…we do, through premiums and higher co-pays/deductibles etc. I actually had someone say to me once, “hey there’s this new medicine out now that’s supposed to let you get back to your life if you have RA.” Naturally I said, “oh yeah, what’s that?” He went on to tell me that Enbrel can “get rid” of the RA. I just shook my head and laughed (what else could I do). We pay to have our disease even more misunderstood!

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    • June 28, 2010 at 6:31 pm
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      I just wish docs would not behave as if it “gets rid of RA” even if swelling is minimized in certain patients & the meds depress the Rf in some patients. Biologics do not treat all symptoms. They do not eliminate pain even in patients in which it is effective, from what the patients tell me – and I believe the patients. For others, like me, they do even less.

      Is swelling a key to this mystery?

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      • June 28, 2010 at 11:32 pm
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        If it is a key to this mystery, we need to at least acknowledge that the swelling can come and go on a dime…so when you’re at your monthly or bimonthly rheumy appointment, and you’re not very swollen (as it seems I’m never very swollen at mine), but you tell the doc you’re still not doing very well, they will listen and not just hear. You are absolutely right about not eliminating pain, which is not visible, so if we’re not heard, our suffering goes unnoticed. To what extent swelling & pain are related I don’t know…but I know I’m in a great deal of pain at times, even after being told I don’t look swollen.

        There is no reason to NOT believe patients…

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        • August 9, 2010 at 12:33 am
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          They don’t believe us because to them we are all whiney drug seekers.

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      • June 29, 2010 at 12:20 am
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        I have stumbled across decades-old “research” that indicates RA is psychosomatic, even going so far as to describe the women in the study as envious of men, and therefore resistant to accepting their appropriate role in family & social hierarchy. Apparently, this conflict causes such angst that they physically manifest by developing RA. No … I am not kidding! I can’t imagine the stigma of having RA in the 1930’s with the disability and deformity, and then dealing with a doctor who thinks it’s caused by my penis envy …

        So, things have improved dramatically for RA patients, but clearly not enough, when the medical establishment continually declines to accept anecdotal evidence of disease activity. Maybe in another 60 years **sigh**

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        • June 29, 2010 at 12:51 am
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          Jackie, I have read more recent articles than 1930 where a strain of that is believed. And some things from the last decade that disturb me. Maybe if we keep pushing back, it will only be 20 yrs?

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          • June 29, 2010 at 12:32 pm
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            Thank goodness I’m only psychically manipulating my finger joints to avoid wearing a wedding ring that represents male oppression. Whew! I thought there was something physically wrong. rofl

            Good luck at the doc today.

          • June 29, 2010 at 5:29 pm
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            Exactly. Good thing it’s not serious. :O

        • October 8, 2010 at 10:31 am
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          [[RA is psychosomatic, even going so far as to describe the women in the study as envious of men, and therefore resistant to accepting their appropriate role in family & social hierarchy. ]]

          [has just spewed coffee all over the screen]

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  • July 2, 2010 at 2:29 pm
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    It’s not just old research, either. I remember once, not long after I first was diagnosed, a woman in the elevator took it upon herself to inform me that my RA was all in my head and due to internalizing my emotions. People are incredibly misinformed about RA, and those TV ads don’t help.

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    • October 8, 2010 at 10:29 am
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      [[a woman in the elevator took it upon herself to inform me that my RA was all in my head and due to internalizing my emotions.]]

      Ugh, I hate it when that happens!

      No doubt that RA can be exacerbated by stress, but stress doesn’t CAUSE RA, otherwise we’d all have it.

      Maybe a good response to someone like that would be “Would you like to hear the internal thought I’m having right NOW? No? I didn’t think so. Have a good day.”

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      • October 9, 2010 at 12:52 am
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        I have a funny reply to this. I think stress is suppose to decrease immune function. Follow my logic? LOL. Personally, I was (am) a very happy calm peaceful soul so the stress cause is baloney. What do they say to babies with RA? some babies deal with stress wrong & get jra – dumb idea.

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  • July 9, 2010 at 5:03 am
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    Mmmm Hmmmm, maybe this is one reason. Always lots of talk of new markers, but they never seem to become commercialized. See this article on IL6\\

    Korean J Lab Med. 2010 Jun;30(3):301-6.

    [Measurement of inflammatory cytokines in patients with rheumatoid arthritis.]
    [Article in Korean]

    Kang SY, Kim MH, Lee WI.

    Department of Laboratory Medicine, The East-West Neo Medical Center, Kyung Hee University School of Medicine, Seoul, Korea.

    Abstract
    BACKGROUND: Inflammatory cytokines such as tumor necrosis factor alpha (TNFalpha) and interleukin (IL)-6 play an important role in pathophysiology of rheumatoid arthritis (RA). We investigated the possibility whether TNFalpha and IL-6 could be used as an objective marker reflecting treatment response in RA. METHODS: Erythrocyte sedimentation rate (ESR), C-reactive protein (CRP) and rheumatoid factor (RF) together with TNFalpha and IL-6 were measured in 159 specimens obtained from 95 RA patients. RA patients were divided into pre-treatment, methotrexate (MTX) and non-MTX groups by treatment regimen and into inactive and active groups by disease activity. The agreement between changes in marker levels and treatment response, and the correlation between each marker were analyzed. RESULTS: IL-6 was higher in active than in inactive group of patients in all three different treatment subgroups, but TNFalpha was not different between the two groups. IL-6 showed a better agreement with treatment response (MTX group, K=0.58; non-MTX group, K=0.21) than ESR or CRP, whereas TNFalpha did not show an agreement with treatment response. IL-6 was correlated with both ESR (r=0.22) and CRP (r=0.54), but TNFalpha was correlated only with ESR (r=0.21). CONCLUSIONS: Unlike TNFalpha, IL-6 reflects disease activity of RA and shows a better agreement with treatment response than ESR or CRP, indicating that it has an association with clinical features of RA. Therefore IL-6 could be used as an additional marker in the evaluation of treatment response when markers like ESR or CRP show results discordant from clinical features.

    PMID: 20603592 [PubMed – in process

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    • July 9, 2010 at 10:54 am
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      Chelsea, Interesting. I’m going to print this from the original and give it to my rheum doc.

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  • August 9, 2010 at 12:23 am
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    April 29, 2009 2am I awake in pain worse then my most horrible nightmare. I tried to get out of bed and realized my arm would not even lift the thin sheet i had on, I was terrified. The neighbors finally heard my screams and call 911. This was my welcome to RA. For those that like numbers my rf factor was 619.5, sed rate 155, ccp >250. I was lucky and got SSDI within 6 months on my first try so money became less of an issue but I had no insurance, so finances stayed tight. My first rheumatologist was great, she had RA herself including the ulnar deviated fingers. She explained things to me so I could understand them, not that I am stupid but in shock from the drastic change in my life. MTX is not an option cause of a non-alchohllic fatty liver with elevated liver enzymes. So, we tried the sulfasazide (spelling error). It did nothing. At this point I ran out of savings and had to be referred to the clinic. Continued on 80mg prednisone daily and not able to do simple tasks. Multiple trips to the clinic, and frustrated, like wrestling a polar bear to get information out of these people. No change in treatment. I am a +tb converter, but no history of tb. They wont give me biologicals. Go Tuesday to see a different rheumotologist, wish me luck he is willing to try something besides the prednisone.
    I have not gotten any adaptive devices, simply if I cant do it, it doesnt get done. This site has made me want to fight again. But fight differently, I might not be able to walk the mall but I’ll get a wheelchair and go enjoy the mall. I will get and use ever device to make me independent again. I might not be able to do alot of things, but my life isn’t over yet and I’m not going to let RA take what I have away.

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    • August 9, 2010 at 9:30 pm
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      Tanya, I’m glad you are fighting in whatever way you are able. good luck with the new rheum doc!

      Whatever happened with that first rheum doc? If you’d like to email her name to me, I’d love to find out about a doc who has RA.

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  • October 8, 2010 at 10:08 am
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    What you are saying is so good for me to hear thank you for putting this up. My doctor and I have gone roundand round about the fact that i am in PAIN. Yes i have had ra almost 30 yrs yes i have alot of deformaties due to the yrs of ra. And yes dog goneit it hurts! and no the mtx and the humira or enbrel or what ever i am taking over the yrs doest take the pain away. no i dont want to be on pain control meds but i need to do something as the pain gets bad enough i break out in a clammy sweat and become non functional. or i cant sleep and cant get comfortable enough of just sit or lay and not ache. i am so tired of doctors not undrstanding the pain aspect of the disease.

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    • October 9, 2010 at 12:47 am
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      Reni, it sounds just riduculous to me that the doctors do not understand this. I guess our awareness needs to start with them.

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  • October 8, 2010 at 10:24 am
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    I’ve posted links to this article all over the place! Thanks!

    For me, a combination of methotrexate and Enbrel has put me as close to remission as I’ve ever been, but not quite there. The best it does is control my tendency to flare up twice a year – I still have aches and pains, still need joint surgeries. I’d stay it has slowed down the progression, but hasn’t stopped it.

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    • October 9, 2010 at 12:50 am
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      Wow. Thanks Carolan. It seems some have better response to treatment than others, but aren’t these stats stunning?

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  • October 8, 2010 at 11:54 am
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    Well . . . crap. I’m one who has no markers (except for low positive RF) and minimal (a.k.a. invisible) swelling. My doc goes off my pain reports to assess effectiveness. His stance: at this point in your disease, pain means you have inflammation. (We haven’t found any erosions or deformities yet.) In other words, it’s all we have to go on.

    And because I had a brief (6 week) total remission on MTX, I think both the rheumy and I are looking for that again–regardless of whether it exists.

    Living the question: how much improvement constitutes success? That is, if most people won’t get dramatic relief, when do you decide a drug is doing enough and stick with it instead of moving on to the next (knowing that a limited number of options await)?

    I know the studies think a somewhat subjective 20%-40% is enough, but what if 40% still means the RA monster is nibbling at joints, tendons, and vital organs? What if the next drug would have pushed it to 60 or 80% and prevented disability?

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    • October 8, 2010 at 12:11 pm
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      I should add that he confirmed my pain was primarily inflammatory based on xrays (which lit up bright as can be) and my response to prednisone. (This is how he rules out fibro, apparently.)

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        • October 9, 2010 at 4:20 pm
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          I think I misphrased that. He took a standard x-ray of the S-I and the joint surfaces were “outlined” with bright lines (seeing it in 2-D here). He said that was arthritis, and that given my age, cluster of symptoms, and the fact that my symptoms abated with prednisone, he was sure it was inflammatory in nature–not OA. So it wasn’t the x-rays that confirmed the inflammatory nature, but they did support my symptom report of serious S-I pain. Thankfully, he saw no erosions at that time, but since then I’ve developed a couple of specific points in the left S-I that hurt even when the joint is otherwise calmed down, so I think there is some damage. Unfortunately, for the last several months, the whole joint has been inflamed nonstop, so I can’t track the “progress” of those points. I’ve not had any other studies of the joint. Right now, the RA and/or PA is clearly not controlled, so he’s focusing on that rather than individual joint issues.

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    • October 9, 2010 at 1:26 am
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      Well said, Kris. Also, what about size of the “uncontrolled” RA? If the RA is a 10 w/out meds and there is a 20% improvement, then that patient lives at 80% of hell. But if someone’s RA is a 4, then a 20 or 40% improvement would make life fairly liveable. None of them are safe from pain or damage or RA eating away like you said on vital organs. AND RA is not steady as she goes. It can rage at any moment. So even those who live with good results on these scales are not out of the woods.

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  • October 8, 2010 at 2:55 pm
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    Loving this conversation! First impulse was to laugh out loud when I saw the title of the article. Duh? Who are these doctors who are suprised that their patients are in pain? What planet are they from? Or do they not really want to hear what their patients are saying.

    My granddad had RA, and I am fully aware how much better things are now than 50 years ago. Lest we forget, you could go straght to a wheelchair in a matter of a year or two then. It happened often. And it still happens (I’m so sorry Tanya) too often.

    But of all the people I know with RA (in real life, not on the internet), I only know one who has had really great success with her treatment (Enbrel, for four years, says she forgets she has RA).

    Most people I know, even if they are helped my their medicines, live with a degree of fatigue at the very least. And most live with substantial pain, medication side-effects, ra related diseases and damage that the medications themselves can’t relieve. So every day is a battle, isn’t it? Even if the biologic works well, there’s the sjogrens and the osteo from the ra and maybe the years of pred. There are the frequent infections and depression. And what else? Depends on who you are. Not a very pretty picture. I have 2 friends right now who are battling mightily against what years of this have done to their bodies.

    Mine seems to change all the time. Sometimes I am better than others–but I am almost never without some degree of pain and fatigue. And a couple of other autoimmune diseases that have popped up since the RA began. And the med side effects. My doctor listens, though. Unlike the one quoted in the study, she does not seem at all suprised by any of this. And I am grateful, grateful for that.

    By the way Kelly, two of the PA’s in my rheumy’s office have parents with RA. Both are extremely knowledgeable and compassionate.

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    • October 9, 2010 at 1:33 am
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      Very interesting – I agree with the stats from what I’ve seen too. Online & IRL. I know you are also right that it changes for most people. So cool about the PA’s!

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  • October 28, 2010 at 10:16 am
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    Reading this article makes me feel so much better. I was on Remicade for a few years and it stopped working so the doctor switched me to Oriencia. It’s been months and I still feel like crap. I’m missing, at least, one day a pay-period due to the pain and difficulty in moving. My RA doc said “well your lab results are really good”, I asked “if I am so well, then why do I feel like this?”. She just brushed it off, “oh maybe there is another issue going on, lets give it more time” I explained that I am single and HAVE to work and that I’m missing so much work, she said that I could take FMLA. I explained to her that I didn’t qualify because the company I work for is so small (you have to have 50 employees within a 75 mile radius). She tried to argue with me that that wasn’t true and I’m an HR Generalist!!!!

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    • October 28, 2010 at 2:54 pm
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      BRE, I don’t know what’s wrong with acknowledging that whatever you say is what it is – whether it’s the symptoms or the work schedule. You obviously know what you’re talking about. I do think it’s not personal because medical folks may be trained to do that (minimize) to try to avoid “catastrophizing.” However, it certainly is a barrier to efffective communication. And why do so many docs act like the Biologics will make us feel cured? Are they really that convinced by what they’ve read or is it wishful thinking? Sorry for so much thinking out loud. Take care. ?:-)

      Reply
  • October 28, 2010 at 11:37 am
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    Tanya, Kelly, and anyone else out there determined not to let RA define who you are, good for you! Just being a fighter makes a huge difference in our ability to deal with this disease. The daily pain, fatigue, and the muscle weakness, etc. and all the other stuff that doesn’t show up on x-rays is very real, even for those of us who have responded to biologics, etc. Most of us do not ever have our old normal back again and know that if the meds stop working for us, we are back to not being able to comb our hair, etc. Because of biologics, I am able to wear something besides sweats, cook for us, etc., but no way do I have my old life back. I hate the commercials that imply that we will. Like all you warriors, I am determined to make the best life that I can, even when daily concessions and modifications make that difficult.

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  • October 28, 2010 at 12:54 pm
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    It is sad that we have to live with so much fatigue and pain and basically feeling sick when we are getting all of the help that is available to us. I am on Actemra and responding to it as evidenced by less swelling and morning stiffness. However, the pain and fatigue remain. I wish those commercials were true. Is it any wonder we are depressed? ! ? !

    On another note, I am taking a class working on a Master’s degree in family therapy. The textbook: Development Across the Lifespan by Robert Feldman 5th edition Published in 2008 on page 451 says “…stress may lead to psychsomatic disorders, medical problems caused by the interaction of psychological, emotional, and physical difficulties. For instance, ulcers, asthma, arthritis, and high blood pressure may-although not invariably-be produced by stress.”
    This is NOW not 20, 30, or 80 years ago. If this stuff is still in college textbooks, is it any wonder people don’t really believe RA is that bad? Reading that caused me to have some stress induced rise in my blood pressure 😉

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    • October 28, 2010 at 3:01 pm
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      Joy, I was stunned by your comment since I had just finished writing an article which made that point exactly. I may just link here to this comment page so others can see it. Honestly, we do have our work cut out for us to change this situation, but look at how many of us are onto it now. We can band together & insist that the truth be told. No more bad books! :thunder:

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  • November 28, 2010 at 4:58 am
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    I’m struggling with this too. How long do I wait. And if my SED rate is “normal” but my wrists feel broken and my rubber gloves are going up a size in the one hand. What does that mean? Wait? More prednisone to bridge? while the remicade works? Float along some more while trying out one biologic after another (very expensive). I’m pretty worn out from it. It feels like a cake walk!

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    • November 30, 2010 at 8:12 am
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      Hi Beth. My doc has told me six months as a waiting standard. I know other docs use 4 months… What did yours say? Also, did you read here already? More discussion of that.

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  • May 9, 2011 at 12:22 am
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    So true, doesn’t seem to find the right “cocktail” or if I do, it stops working after awhile, be it meds, alternative or herbal. The biggest complaint is the “pain/stiffness” in the morning. Some days are just horrible, like today, unable to even get dressed by noon!!! It has to be something that works for this stiffness !!!

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  • March 30, 2012 at 6:13 am
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    I have been thinking my biologic wasn’t doing its job since the ppl in the tv commercials seem to have a lot more energy & less symptoms than me. But when I talk to my rheumatokogist she just looks sympathetic, really no answers. I was even thinking about finding new Dr. but I hear she is one if the best. Very frustrating. Thankful for you and your research to give us a truer picture of the facts.

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  • July 2, 2012 at 3:58 am
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    RE: RA s/s Not Alleviated By Disease Treatment. Thank you once again Kelly for bringing me important information. It may sound dumb (in fact, very dumb), but I did not know that others with Rheumatoid Disease were taking (gasp) pain meds, anti-depressants and prednisone. I’ve been given the impression that I am simply “weak” or “catastrophizing” and basically abusing medication, even though I hate the side effects. The medicine does not totally alleviate my symptoms, but does allow me to get out of bed sometimes and do the laundry sometimes. I have been so ashamed of my sudden “laziness” and “addictions”. It is a shame though that seemingly the only place to find accurate disease information is on a patient blog and not from physicians. I am sill amazed at some of my experiences with the medical community since I developed this illness. Thank you once again Kelly for all your hard work. Believe me, there are many of us out here who really need your advocacy. But, please don’t forget to take care of yourself too.

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    • July 2, 2012 at 2:14 pm
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      Thank you Beverly! I’m trying.

      I’m so sorry you were ever made to think that – I hear it a lot on emails… We hope to show statistics which prove we are not all “atypical” outliers who are exaggerating our conditions. It should be criminal that people are told such things as this, with a disease that kills. Speaking of which, here’s an article I just used for a post I’m working on about what we need in care: http://rheumatology.oxfordjournals.org/content/46/2/183.full

      Experiences in the medical community that I’ve had with RA also amaze me! Same as you. And then there’s the experiences of thousands of other patients that I hear about. It all truly stuns me. Working on a post about that also… lol.

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  • August 27, 2012 at 2:45 pm
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    Hi All,
    Just found your site. It is GREAT,I have had RA for 11yrs now. 6mo after my little sister passed, I could not get out of bed. The pain was over the top. So severe I could hardly take a breath. My family Dr. at the time just said its only grief dear. Go home and rest you will be fine. After many more visits and swelling,PAIN, redness, feeling tired etc. He finally gave in and sent me to an RA Dr. She took one look at me and said you have RA. After blood tests etc, I was RA factor neg. That lasted for a yr now it is possitive. At first I had 22 affected joints, now my entire body.
    On pred, methotrexate, remicade infusion. Still not even 60% can no longer work. What really gets me is my RA Dr. even though she is great does not think pain should be an issue with all the meds I am on.
    I would really love for them to live in my body for just a day. I know they would jump out screaming. Some days are better than others, the RA just does what it wants sometimes hr to hr. Happy I found this site.

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    • August 28, 2012 at 8:39 am
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      Hi Carmen, good to meet you!
      What your dr said that “pain should not be an issue with all of the meds you’re on” – that is bothers me. She needs to be addressing the pain of RA – a severely painful disease – she can either treat your pain herself or have someone who is a pain specialist to refer you to.

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  • November 3, 2012 at 2:41 am
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    I am one of the lucky ones. My disease was diagnosed early on. I responded well to the medications and only have slight joint deformity in one thumb. But even with all that I don’t get complete pain relief. I just started Humira after several years on Enbrel. The Humira started working after one week and my pain and fatigue decreased. But like was stated in the article I am also on pain medication, anti depressants, and NSAIDs and what about the other things that seem to go along with this. The three sinus sugeries, the gum graft surgery, the tooth extraction with bone graft, the multiple root canals and crowns and to think I am one of the lucky ones.

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  • February 23, 2014 at 1:00 am
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    Why was the study focused on women exclusively? I’ve been on the same general medicine regimen with very little relief and still have almost every symptom mentioned. It’s bad enough that this disease gets so little exposure and even less if you happen to be a male with RA…

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    • October 17, 2014 at 12:09 am
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      I have no idea why, John. I wasn’t part of it.
      Your situation (“on the same general medicine regimen with very little relief and still have almost every symptom”) is similar to many others.
      I agree with your last statement too – and we’ve worked hard to do all we can to bring attention to the fact that men are also affected. Click here to see 10 posts tagged “men” and a video I made to especially bring attention to it.

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  • May 22, 2015 at 7:27 am
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    On biologicals for about 7 yrs. In October i quit, changed my diet and started acupuncture. Feb 13 rheumy declared i was in remission! I fave less pain than on biological.

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  • May 22, 2015 at 10:24 am
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    Another problem is that people who have overlapping autoimmune diseases along with RA may not be able to take many of the biologics that are available for RA treatment. I have Systemic Lupus Erythematosus. Because of that I cannot take Humira, Remicade for fear of liver and kidney damage. It’s made treatment much more difficult and less effective for me.

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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