Tuesday, July 17, 2012

July 2012

Summertime is with us, and it's hot and miserable, much like last year.  The difference is, however, that I am running this summer.  Sweet.  I have a healthy body to date, but am still trying to wean down from the 10 mgs of Prednisone that seems to be what my body wants in order to stay active and pain-free.  I can do ok around 8 mgs, but am much more vulnerable to aches and breakdowns.  Not much has changed in the last several months.  I have had a few small rollers in my CPK profile, but nothing that hasn't been quickly controlled with 10 mgs of Prednisone. 

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.)