I never came out and said what I was diagnosed with last week. Mostly because I did not understand what was going on. So here it is, the short and sweet. I have:
- Juvenile Rheumatoid Arthritis (and was diagnosed at the age of 3)
- Lupus (officially diagnosed last thursday)
- myopathy (officially diagnosed last thursday), which is a neuromuscular disease in which the muscle fibers do not function for any one of many reasons, resulting in muscular weakness. In my case, my immune system is compromised and is attacking good muscle tissue. Good news is that it is only affecting leg, arm, liver but not the kidney, lungs or heart. So it looks like we caught it early! YAY!
- and some sort of thyroid issue (unofficially diagnosed last thursday), causing me to feel as if I am going through menopause. Hot/cold sweats are no fun!
The new drug regime:
- high dose steroids - can you say side effects and its only been a week! Crazy hunger, random anger (but holding it in check), the shakes and today my hands swelled up, making it difficult to hold a pen. And I am going to be on this indefinitely...
- aspirin - really not worried
- plaquenil - been on before not worried
- Rituxan - which is a drug primarily used for treating Non-Hodgkin's Lymphoma (NHL) and in smaller doses RA. This is the drug I am worried about. It targets the CD20-positive B-cells and is supposed to work well, if it works. It is a chimera antibody (both human and mouse) so there could be rejection issues. But it's still a scary treatment, where I have to go into an oncology clinic and get infused with the drug over a period of 6 hours. Good news, I only have to do this twice. Great news, if it works I will see results n 4-6 weeks!
There are still a million and one little details to figure out and organize, but I think that with this weeks progress, I may get a few hours of uninterrupted sleep tonight.