Sarcoid, on the other hand, is complete guesswork. Over the past 2 years I have been on 2 different chemo drugs, 1 TNF drug, mounds and mounds of steroids, sleeping pills, bone stengthening infusions and heart medication to combat side effects of the mounds of steroids, and now a malaria drug.
With the exception of the steroids, which damaged my heart, bones, skin and sanity, nothing has helped. And, to be clear, none of the drugs I've taken are specifically for Sarcoid.
There are no drugs (besides the steroids) that are approved for Sarcoid. Why? too few people have it so there are no research $$ for it. There are a few doctors and clinics that are trying, but because the stupid disease manifests differently in everyone, what works for "most" doesn't work for all. And so far, none has worked for me.
So, back to the drawing board, and the steroids. The new plan is to fill me up with steroids for a few months at a level that hopefully will leave my heart, skin and bones alone. We'll continue the malaria drug while doing that, then add a new TNF drug on top of all of that after I have enough steroids in me so my body won't reject the new drug. The new drug will be 2-hour infusions every 6-8 weeks for a few years; if it works. And of course, the steroids.
The goal is that I will not feel like I've been hit by a truck every day, that I'll have enough energy to exercise again, that I won't cough and hack all day, and that I'll be able to finish a thought without having to gasp for breath. Of course, that's been the goal all along, hasn't it.
