Joint Effort of Rheum Patients Will Outshine Progressing RA | Rheumatoid Arthritis Warrior

Joint Effort of Rheum Patients Will Outshine Progressing RA

peeking bearTonight I heard one of the countless diabetes ads. “Are you still using a violent syringe? Buy our flexpen syringe…” Huh? They said it again, only this time I realized it was “vial and syringe.” Funny how we can hear things in a certain way – like the word progress, which can be pronounced two ways.

A progressive rheum disease

I’m always curious about patterns in the ways that RA progresses because the last few years, I’ve only seen my RA get progressively worse. In fact RA can progress in diverse patterns or at different rates, but one thing is almost always certain: RA does progress. It’s called a progressive disease.

When we grasp that, it gives us a sense of urgency. We need to fight to discover ways to make small changes in the care of RA as well as searching for a full-fledged cure.

Rheum relief and other areas of progress

I’ve often found myself encouraging people, “You deserve relief.” I never thought about it, but it comes up repeatedly. We live with so much pain and destruction with a disease we know doesn’t currently have a cure. We can become able to tolerate circumstances that are intolerable. As people with RA, we are resilient and develop extraordinary endurance.

Last week, to honor of the blog’s 2nd birthday, I decided to consider some issues that have been noticeably significant over the last two years. We started with RA swelling. Soon, I’ll post a couple of more frying pan posts on topics like testing, exercise, and goals of rheum care. Where do we stand? And what do we need?

Over the next year, I hope we can encourage each other to press forward, find relief, and improve rheum care. Hopefully, we will see innovation and progress.

Notice the confidence of the NRAS (National Rheumatoid Arthritis Society, UK) in their video.  They describe some ideals that are not the way things usually work in rheumatology… YET! But, in another post last week, we saw Positive Signs that patients will progress as their views are considered by physicians and researchers.

Jointly, progress may be slow, but sure

Painful shoulders and hands have slowed down my work so that I’m even more behind than usual. Our holiday weekend was spent trying to extricate a virus from my laptop and restore the corrupted programs. Even in discouraging circumstances, the outpouring of reassurance and help I’ve received further strengthens my conviction that together we will make progress against RA.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

21 thoughts on “Joint Effort of Rheum Patients Will Outshine Progressing RA

  • June 1, 2011 at 7:30 am
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    This is interesting! I was searching the other day for patient particiation and stumbled on the UK NICE guidelines for Rheumatoid Arthritis issued in 2011 – they have a group that issues guidelines and learning programs for GPs and specialists. Patient experts (patient EXPERTS!) participate in these discussions!
    Based on what I had read, it was clear that they realized that they had a problem with GPs not always recognizing early RA and referring to a rheumatologist for treatment and were trying to improve the knowlege level of their GPs to recognize and refer – urgently – for early and agressive treatment.
    I don’t know how effective thier program is, but they are at least trying!

    Reply
  • June 1, 2011 at 7:31 am
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    Darlin’ – I wrote to the REF about the research program of the ACR. I pointed out the joint efforts with patients that is occurring in Canada’s research program, and suggested that patients be added to all the councils, boards and research groups of ACR.

    Naturally, no one wrote me back…

    But maybe, just maybe, if enough of us write to them, they will make the effort to include us in their research projects – planning, developing, defining how groups of subjects are defined, etc.

    I’m keeping you in my prayers – especially for your poor shoulders!
    Love
    Elizabeth

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    • June 1, 2011 at 8:14 am
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      I’ve been invited to attend their upcoming investigators’ meeting this month – but not as an advocate, only as press. To whom did you address your communication, so I can ask about your reply?

      Also, I think we might have better luck with 2 avenues:
      1- acting through our new foundation – I’ve been contacted by some curious folks already
      2- pursuing industry-based studies – They are already interested in us from the marketing side, but the key is to break into the research side. It’s been a goal for 2 yrs. Cancer & diabetes patients have made progress here. But so far not so much rheum in the US.

      HOpefully highlighting what is done in Canada, UAE, and Britain will make some Americans at least curious.

      messages brief & awkward due to shoulder pain. may add to later.

      Reply
      • June 1, 2011 at 11:07 am
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        Kelly – I went here: https://acr.rheumatology.org/feedback/REFcontact.aspx
        and filled in the contact form. I should have kept a copy for me, but I didn’t. Basically, I shared the URL for the Canadian Health article about Kate Wilhelm and suggested ACR should be doing the exact same thing – including patients on each of their committees and councils and research boards in order to be sure patient needs are addressed.
        Thinking positive thoughts about your shoulders and any other flared joints…
        Love
        Elizabeth

        Reply
  • June 1, 2011 at 10:37 am
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    Hi Kelly,

    I have been feeling fluey and achy due to the low baromtric pressure in London – I really feel for you.

    I completly agree with hating those “chirpy” articles, videos, etc. about “beating RA” and overcoming pain, especially when I feel like crap!

    My own Rheumy has told me that I am officially “in remission” (I had a CRP of 1.0 last time, all bloods normal) and that fewer than 10% of his patients achieve that kind of disease control. I know I lucked out in the RA symptom stakes (I am seronegative), but I am angry everytime I hear some idiot trying to minimize the symptoms of RA sufferers and implying that they are just not trying enough.

    I’ve had RA for just over 3 years now – I had my first transjugular liver biopsy to check for any signs of methotrexate liver fibrosis – and all was normal! Bad news is, I get to have a TJ liver biopsy now EVERY TWO YEARS.

    I’ve also started taking a Proton Pump Inhibitor for my horrendous gastric reflux, caused by non other than my RA meds! I almost suffocated on my reflux during my sleep last week and had to start medication immediately.

    Also have a foot operation in July to re-align my heelbone. 8 weeks in a hard cast, and 4 weeks in a soft cast. Good thing I work from home!

    Even when it’s well-controlled by clinical standards, an RA patient is never “normal”. It’s a constant fight.

    Reply
    • June 1, 2011 at 1:44 pm
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      Some docs believe the risks of liver biopsy are not worth doing routine biopsy screenings for methotrexate. I guess others do.

      Reply
    • June 1, 2011 at 1:48 pm
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      I can say that my doc did not seem too impressed with UK rheumatologists which really surprised me. Only made some very vague comment about them doing things differently. Again I was a bit shocked by the response. I tend to disagree with it. Perhaps the ACR holds a similar view and passes it along to their members.

      Reply
  • June 1, 2011 at 11:06 am
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    Wonderful article as usual, tyvm Kelly for your time and dedication. So sorry you are struggling right now, this is definately one group that should understand getting behind because of this disease lol.

    Reply
    • June 1, 2011 at 11:26 am
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      Tanya ty! it was very hard to type w/my shoulder & comments are quiet this am. i know we are on the right track for so many reasons but it means a lot to know so many professional people like yourself – and Eliz. are in this together. It’s so encouraging to see whats happening in other countries already. or should we say finally? 😉

      Reply
  • June 1, 2011 at 1:45 pm
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    Thanks Kelly, that was interesting. The UK and other countries are more informed in this than we are in the US. Hard to believe, I work with nurses and docs who still look at my hands and tell me I must have a mild case, yeah, that’s why I’ve missed 15 days of work since January. {I only work three days a week}. It makes me wonder if their campaign would help here, maybe the biologic manufacturers could help get the word out.

    Reply
  • June 1, 2011 at 3:08 pm
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    Chelsea- i had a transjugular liver biopsy, using a needle inserted through the vein in the neck rather than the traditional method, which carries the risks you are referring to. It is very possible to present with acute cirrhosis of the liver having normal liver enzyme results for years. My herpetologist has seen people like this. I prefer to have a biopsy!

    Re: quality of Rheumatologists in the UK, I go to a Rheumy with an international reputation in Central London. I receive top quality care. oh, and all my medications are FREE for life because I also have pituitary insufficiency. Of course it is possible to get poor quality care in any country – I know that Kelly herself suffered at the hands of doctors who did not grasp the problems she had with RA as have other people on this site.

    I think you are doing a disservice to British readers of this blog without substatiating your comments about British Rheumatologists. BTW, I am an American from California!

    Reply
    • June 1, 2011 at 6:59 pm
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      Jamilla – I believe Chelsea was only passing along what her Rheum (whom she seems to trust) has to say. Things are done so differently from country to country that it is hard to compare their treatments and outcomes.

      It’s true that there are both good and not-so-good docs in each country, so that complicates things, too.

      Just sayin’ . . .

      Reply
      • June 2, 2011 at 9:23 am
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        Dear Turtlemom,

        Please read my response to Chelsea.

        I am done with this forum and am unsubscribing.

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        • June 2, 2011 at 10:48 am
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          I would be sorry if you did Jamilla. When I read over it, Chelsea seems like she did not mean to offend UK doctors. Things can come across differently when we cannnot see facial expressions. I’m sorry if you felt offended.
          I have only praise for the NRAS and I’m glad that our readers are international, not all American.

          Reply
    • June 1, 2011 at 7:27 pm
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      Jamilla,
      Glad to hear about the new way to do liver biopsy and you are right about the normal enzyme levels despite damage. That’s another topic Kelly might want to write about someday.

      You must’ve misread my writing about British rheumatologists, or perhaps I wrote it poorly. I was stating that MY RHEUMATOLOGIST is the one who made the disparaging comment to me about British rheumatologists, and I wrote here that I disagreed with her statement. I then wrote that perhaps the ACR is perpetuating some kind of negative school of thought regarding their counterparts across the pond. They probably don’t like Canadian rheumatologists either.

      She made that comment to me when I tried to bring up and article regarding some new guidelines being proposed by some British rheumatologists. Frankly, I’ve never come across a single recent article by any US rheumatologists proposing these guidelines. I’m more impressed at the work of the British rheumatological researchers if nothing else by the fact that they are even trying to address these issues. Also, much of the work being done on rheumatoid arthritis comes out of the Netherlands and they should be praised for being leaders in research efforts on our behalf.

      Reply
      • June 2, 2011 at 9:19 am
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        Chelsea,

        I am usually irked when someone makes generalized comments about something, lacking proper information. For example, you assumed that I had a Percutaneous Liver Biopsy, which is definitely more risky than a Transjugular Liver Biopsy (which I had), and that there may have been no clinical requirement for a liver biopsy at all. I discussed the risks with my Rheumatologist and my Hepatologist, and we all agreed that a Transjugular Biopsy was indicated. We tried a Fibro-scan first, but didn’t get good enough images to determine if the liver had any fibrosis, so a biopsy was ordered. This concern was due to a sudden, rapid uptick in my ALT.

        Secondly, I do take exception to casual negative remarks by your Rheumatologist about colleagues in other countries, without you providing susbstantive data to tell us WHY he had that opinion. I would like to see such statements supported by facts and data, and if you disagree, WHY you disagree and what the basis is for disagreement.

        Finally, though I do love Kelly’s site and think she’s doing a fabulous job, the information presented here is understandably US-oriented. I can see by some of the remarks on this site, that some people in the US seem to think that Rheumatology treatment is naturally better in the US than in Europe. I disagree, as many pioneering studies and treatment protocols have been pioneered in Europe, and this is back up by published studies. Reminder again- I’m from California, but have lived in the UK for over a decade.

        Reply
        • June 3, 2011 at 2:17 pm
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          Jamilla,
          I cannot back up anything she said with reasons because she did not give me any reasons. It was a long time ago and I cannot even recall the exact comment, just the tone and that generally it was something about how they do things differently. I did not say I agreed with it. My point in brining it up at all was to say that there are probably some unknown contentions between groups of rheumatologists in one country versus others. I did not say they were at all justified. Just trying to point out there might be some difficulties in dealing with the ACR (which others were discussing above) because of unspoken views and attitudes.

          I was interested in your liver biopsy comments, and I’m sorry if I assumed it was just routine rather than b/c of elevated enzymes, but you didn’t say elevated enzymes in your first post. However, yes, many rheumys will disagree with continued biopsy screening every two years after the first test was normal (if for no other reason than to keep medical costs down), unless your enzymes continue to be out of whack. I’m not stating that as my own judgement please understand. Many patients often get what rheumatologists here seem to think of as idiosyncratic elevations of liver enzymes that often go away on there own, or with reduction or stoppage of methotrexate, or adjusting of other meds that may be interfering, and resumption or re-increase of methotrexate later seems to pose no problem. Perhaps that is why they don’t believe in doing routine or initial biopsies. I’m just guessing there. I’ve not researched the liver thing extensively. I have not per chance come across any articles talking about many RA patients having serious liver damage and/or needing liver transplants because of methotrexate though. Doesn’t mean it isn’t serious though when it does occur in a few though and I do understand your fear, and your hepotologists fear of a rare but possible side effect that doesn’t give any advanced warning before it gets serious. Kind of like pulmonary fibrosis induced by RA itself, or caused by any of the many meds used to treat RA.

          I did not know there was a different way to do liver biopsies now. I do know there were recommendations out there some years ago about doing routine biopsies while on methotrexate. I too had elevated liver enzymes – one of which took 7 months to come back down to normal. My rheumy did not feel a risk of liver biopsy at the time was worth it. That was a long time ago. I don’t know if she would say the same today. I really liked by rheumy, but it doesn’t mean I bought into everything she said. My general and other specific research on RA and related items is what made me not buy into her statement about UK rheumatology practice. We just didn’t have time for her to go into her reaasoning, so I cannot say it was sound or not. Just bringing it up for the ACR reasons stated above. I guess we all need to try not assume, especially in a written forum.

          Reply
  • June 1, 2011 at 8:57 pm
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    Great blog post. What I think? I think the UK has nationalized healthcare and therefore it is in the interests of its nationalized doctors to reduce the long term damage of ra and provide early intervention since joint damage will require surgeries, etc. It is in their interest to avoid disability with their citizens. It is going to take a huge effort to bring on change here but an effort that needs to be done.

    Reply
  • June 1, 2011 at 9:42 pm
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    I wish we had a more agressive campaign on what RA is and how it effects those who suffer through RA. There is such a mis-representation by Ads and even Arthritis foundation. Lets have a walk! Duh! So ridiculous! Even if we are doing well in relation to those who are no finding the right medication therapies, we still suffer from pain and stiffness that effects our work and home life. I wish we could find a way to educate both the general public and the clinicians. What a dream!

    Reply

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