One of my large projects that I have been wondering about has involved whether or not a specialty clinic such as Mayo or Johns Hopkins would be a good idea. Both of those places have a much better concentration of Polymyositis specialists, knowledge, and patients than the average rheumatology clinic in small-city Arkansas. Before committing to it, however, I sought a local second opinion. The opinion was that I am basically getting a "bargain" in my treatment right now. Still responsive and highly functioning on relatively cheap and easy medication. I would probably not get any increased benefit from a visit to Mayo... which would be more appropriate if I had a tougher case to crack. I might travel a long way for them to say, "keep doing what you're doing." This consult also seemed a little more progressive and unafraid of new drugs that are coming to the forefront. He seemed a little bit more eager to embrace Rituxan as a beneficial drug, once FDA and insurance companies became more routinely accepting of it. I came away from this a little less afraid of other treatment options. Not that I have been afraid of the treatments themselves... it's more like I've been afraid of a lack of treatments. I am a little more confident now that there could be life beyond Methotrexate.
Refueling at the Ouachita Trail 50K in April
So yes, I'm still on too much Prednisone. 10 mgs is not bad, but still too much for everyday use. I feel that I move at a snail's pace trying to get off of this stuff, and I flare up so easily once I get to a certain dosage. (which, of course, the doctor explains away with my running habits. which, by the way, aren't that extreme. and also which I refuse to believe. Other people that I run with don't have CPK problems, do they? So there.)
Hey. I have Poly and run marathons as well. I'm not on predinsone, but i get Rituxan twice a year (I'm on methotrexate as well- too afraid of a flare to wean). I call 100% bull on flares related to running. I went to the NIH and they basically said "keep doing what you're doing" so I don't recommend going unless treatment isn't working.
ReplyDeleteI got a local second opinion that basically said the same thing. I'm glad I did that locally before I trucked it across country on my own dime!
DeleteHi. I have Poly too. Just newly diagnosed as of April 2012. Actively researching how to give my immune system what it needs in order to get off Prednisone. Prednisone is so harmful. Let's compare notes.
ReplyDeleteHello! I was anxious to get off as soon as possible as well. However, I have adjusted that mindset a little as I've had chronic trouble getting below about 8 mgs. I've been telling myself that a chronic low dose may be ok, although 8 is still a bit high to sustain over years and years. I think my doctor and I would be happy if I could get under 5 without the CPK going on the old roller coaster. This disease is long term. Whatever treatment you do, it has to be able to keep you both healthy and happy for years and years. If 5 mgs of Prednisone means the difference between a fairly active, normal life and chronic inflammation, I'll take the Prednisone.
DeleteMy husband was diagnosed with Polymiositis in May 2012 but I suspect that he has had it for a very long time. Started on Methotrexate to wean off of Prednisone in late July. Wound up for a week in the hospital in Auguest due to shortness of breath.
ReplyDeleteHe now has been diagnosed with Interstitial Lung Disease. Oftentimes this comes along with Polymiositis. I am reading on the internet that there is not a lot of hope for him. Do you have any information regarding this? He has been a very active man for his whole life. Daily surfing, golfing, or working out. Sometimes all three. Now he has lost 25 pounds and can only surf 15 minutes and he is spent.
Hello,
DeleteI'm sorry about the ILD diagnosis. I have read about that as a frequent partner of Polymyositis, and it sounds like a tough situation. I am fortunate enough to say that to date, I don't have any concerns with ILD, although I do worry about it often. In fact, I had a nasty round of bronchitis over the last 2 months, and I thought that I might be experiencing the beginnings of some lung issues. Please keep me posted.