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Bonesmarties with RA

Discussion in 'Social Room' started by kneeper, Dec 15, 2011.

  1. kneeper

    kneeper Forum Advisor

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    After talking with a few people I decided to start this thread for those of us with RA. (or any interested people). I know there are a whole bunch of us on the forum. Sometimes we're dealing with additional or different issues than other Bonesmarties and I thought this might be a nice place to chat about those particular things.

    So to get the ball rolling--2 questions:

    Did your doc tell you or do you sense that your recovery from TKR or THR seems longer than "average?"

    To me it seems like I had higher levels of fatigue longer than for some. Then again, I did have an anemia problem. :DOH:


    What's the best thing about having a new joint (or planning to get one)?

    Personally, besides the lack of pain, I'm getting a bit of a kick out of having a knee that looks like a knee. :wink1:
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  2. Jamie

    Jamie Administrator

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    Excellent idea for a thread, kneeper! I hope some of the others who are or have experienced RA complications will see it and post. Don't get discouraged if it takes a while. If you don't get a response in a few days or a week, post again to bump it to the top of the Social Forum. People see it better that way.
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  3. rubysue

    rubysue Senior

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    Thanks for starting this thread. To answer your questions:

    1) My OS did warn me that my RA could be a factor in my recovery. So far, it has not been a problem, other than the fact that I had some mini-flare-ups in other joints when I was down to minimal narcotic pain relief. My recovery has been very good so far, even with the small setback with my return to work this week. I attribute my recovery to the following:

    A) Good surgeon
    B) Physical preparation prior to surgery (weight loss, exercise)
    C) Low dose prednisone for my RA
    D) Good balanced diet with lean protein, yogurt, fruits & veggies, etc.
    E) Good support from my hubby
    F) Prayer

    2) My new knee is amazing. It is strong, relatively pain-free, and moving very well. The best thing: No more of that wonderful bone-on-bone pain.
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  4. kneeper

    kneeper Forum Advisor

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    ARe you on pred all the time or just for the surgery recovery phase?

    I had a short course of it when I got plantar fasciitis in the opposite foot and that ankle flared up at the same time. I had to go off NSAIDs recently due to ulcers. :(
  5. kneeper

    kneeper Forum Advisor

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    Has anyone had experience with braces for RA or OA?
    We're trying a brace for the left knee, hoping for a bit more stability. So far I'm not sure if it's helping. Between the time we discussed a brace, the brace got ordered and I got it, the knee was feeling better in general. Go figure. And then there's the adventure of getting it on so it doesn't slip down. :rolleyespink:
  6. davrunner

    davrunner Senior

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    Hey kneeper,
    Thanks for this forum, as a recent diagnosis of RA for me I'll probably have lots of questions. I had gone to one Rhuematologist who originally said I had a non-specific inflammatory arthritis and I kinda put that away as no big deal. Now I know what a big deal it is... I had the partial knee replacement before the diagnosis of RA because I'm sero-negative. My new rhuematologist disagreed with the first one on my initial visit as she saw the involvement of both knees, feet and hands.
    Unfortunately my PKR hasn't gone as well as expected and my knee doesn't look normal at all. My recovery was long and and made more difficult by bad back. I may need a revision but want to give the metho a chance to see if it will help and prolong not looking for another operation any time soon.
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  7. rubysue

    rubysue Senior

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    Hi, Kneeper - Sorry it took so long to respond to your question.

    I have been on prednisone for almost seven years. The dosages have been low (between 3 mg and 10 mg) and it seems to keep my RA from major flares. I'm at 10 mg right now. If I get another flare, then we have to look at something else. I tried a DMARD a few years ago (sulfasalizine) but had some abnormal liver enzyme tests in the past so I have not used a DMARD for several years. I guess my RA is considered mild to moderate, although it is fully responsible for the damage in my right knee, according to my OS. I can envision an argument between by rheumatologist and my OS on that topic, as my rheumatologist would probably attribute the damage (which he has never looked at, whereas my experienced surgeon of course saw it in person) to OA. My rheumatologist is a bit of a knucklehead (sorry, I have to state the truth). I'm in an HMO so not a lot of choices available and they work in the same office anyway.

    I was originally diagnosed over 30 years ago when I had severe pain in both feet and episodes of frozen shoulders. It apparently went into semi-remission for twenty years and came back in late 2003.

    Alas, I, too must watch the NSAIDS due to GERD and incipient ulcer pain, although I still sneak them occasionally with food.

    Welcome to this thread, davrunner. Hope I can answer any questions. I am sero-positive.
  8. davrunner

    davrunner Senior

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    Rhuematology seems like such a tough area where it is hard to make a diagnosis and some Dr don't want to make a premature diagnosis for fear of labeling the patient. That was the impression I got from my first RDR, even when the pathologist who looked at the tissue they removed from my right knee said that it was definately due to an inflammatory process he wouldn't make a diagnosis.
    I also have to watch NSAIDs due to my heart. I have mild cardio-miopathy which I understand can be a result of RA though the cardiologist hasn't made that connection.
    How have you dealt with the side effects of prednisone? I have a friend who was on it for so long she had osteoperosis and broke her femur when trying to get up from the toilet.
  9. kneeper

    kneeper Forum Advisor

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    Yes, it can be tricky because several diseases have similar symptoms. I was diagnosed as a kid (4 years old) and in those days they were just realizing kids could get RA. It didn't help that I'm sero-neg. It sounds like your new doc is on the ball though.

    I've also learned that everyone reacts differently to various drugs--some work great for some people and not so much for others. So sometimes you do need to try a few to get the right ones. I've had bad reactions to a few drugs, but methotrexate seems to work well.

    I don't know about your heart situation, but I do know my doc wants to make sure my cardio health is being monitored. I think it's to do with the idea of inflammation in one part of the body possibly being connected to other parts.
  10. rubysue

    rubysue Senior

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    So far I have had very few side effects from the prednisone. I'm trying to reduce the dosage again to see if I can tolerate a lower amount and still not have flares. It's interesting that you bring up the osteoporosis problem. I just had my first DEXA scan earlier this week and have "low" BMD, although I can't understand how they can say that my BMD is low when I never had a baseline done before taking prednisone. My rheumatologist put me on Fosamax a few years ago and I hated it! I stopped after a month. I blame that drug for starting my problems with GERD and my dentist has told me that there is a silent epidemic of people with jaw necrosis from those nasty biophsophenates. How old was this person who broke her femur and what dosage was she on? I personally think there is a lot of fear-mongering out there about osteoporosis and am reading an interesting book about it right now ("The Myth of Osteoporosis").

    I have accelerated getting my left knee replacement done so that I can get back to doing decent weight-bearing exercise again. Vitamin D3 is also a major factor for bone strength and I have gone from extremely low levels to normal values through supplementation.

    Kneeper - sorry to hear that you have JRA. That's a tough diagnosis.
  11. davrunner

    davrunner Senior

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    Rubysue, She had been on Prednisone for a long time, years, and was taking hi doses, I couldn't tell you exactly what dose. I know she is down to 1mg daily sometimes a little more. She has lost loads of weight and can now get around better. Interesting that you mention D3, my vitamin D level was 24 last time they took it. Trying to get it back up to 40. While I work inside most the time I go out in the garden weekly. Now I have several meds that say stay out of the sun...

    Kneeper, as I understand it the inflamation is the issue with cardiology. what I didn't know was you can have inflammation and have your blood test be normal. I've had elevated sed rates only a few times but can feel the heat coming from joints when the number is almost 0.
  12. kneeper

    kneeper Forum Advisor

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    davrunner-- right the sed rates don't tell the whole story. I've had pretty decent sed rates lately, but there can be other indications of inflammation. Your rheumy will look at the warmth of the joints & also your reporting of how you're feeling & other lab values too.
  13. kneeper

    kneeper Forum Advisor

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    davrunner--did you have your first methotrexate? how did it go?
  14. Renate

    Renate Sr Bonesmartie

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    Hi there! Haven't been on the forum for a while. After waiting very long for my hip replacement, I found my recovery etc. very difficult. During my 6 weeks of non weightbearing, I developed RA in my hands/wrists (diagnosed months later as 'severe'). My hip has been great so far, but the rest is going downhill. I took prednisone for a couple of weeks, didn't help, then saw a rheumatologist in September. I got a cortisone injection into my left hand, 2 prednisone shots and was put on Methotrexate tablets (stopped after 4 weeks due to side effects). I also tried alternative supplements. Nothing helped. The end of November I woke up one morning with severe pain in my feet, big swollen knee, bad left hip pain and hands. I also have a lot of stiffness overall since I came off crutches. Anyways, my doctor put me on Methotrexate injections, had 5 so far, and a little improvement. I am still very limited in moving around, nevermind walking. I find it very hard to deal with it, I had such high hopes for the new hip and getting my life back. So I am waiting now for the MTX to kick in, and hope to use a cane or crutch again. The injections are easy to tolerate without any side effects so far, except feeling very cold.
    Sorry about ranting, but it's comforting to know other people go through it too.
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  15. kneeper

    kneeper Forum Advisor

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    Sorry to hear this, Renate. I'm sure the crutches didn't help your hands/wrists. I'm glad you're seeing a rheumatologist. It's good the MTX injections are not causing side effects--I hope the good effects kick in soon.:console:
    Are you taking anything with the methotrexate? A lot of times they put you on a couple of things at a time.
  16. Jamie

    Jamie Administrator

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    So sorry to hear of your latest problems, Renate. I hope things settle down for you soon.
  17. davrunner

    davrunner Senior

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    Sorry to hear the tough time you are having Renate.
    Kneeper, took my second weekly dose of methotrexate last night, woke up at 2 this morning and couldn't go back to sleep. So far, except for more than usual fatigue and increased all over joint pain I haven't had too bad a time. I started the folic acid a week before my first dose and am also taking 10mg of prednisone a day.
    Howlong did it take before you saw any results from the metho?
  18. kneeper

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    Glad you're tolerating the MTX.
    I would say it probably took around a month before I noticed much difference with the methotrexate. Hard to remember now as it's been a few years that I've been on it. I do know that except for something like pred, most of these take a while to build up to a point where you notice the difference.
    DMARDs reduce/ keep the disease activity level down rather than directly treating symptoms so it can take a while.
  19. davrunner

    davrunner Senior

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    Hope it makes a difference. I'm not ready to have a revsion to tkr but that may be my only option if the methotrexate doesnt work. Being sero-negative and having one rhuematologist not diagnosing what now seems obvious resulted in a PKR when if the OS had known he would only have done a TKR. He told me today that RA means you are not a candidate for a PKR.[​IMG]
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  20. kneeper

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