I went to see my rheumatologist on Thursday. We talked about the Kenalog shot I had, and how it only helped my joints a little, and for a short time. My mom and I updated him on some things that have been going on lately, including the episodes of red, hot, swollen joints. He brainstormed out loud to us. He talked about the possibility of rheumatic activity beyond the lupus that is affecting my joints. He had mentioned inflammatory arthritis before, which refers to rheumatoid arthritis. At this appointment he talked about “Rhupus”, when rheumatoid and lupus are overlapped. He also talked about the possibility of Still’s disease. He explained it by comparing it to lupus. He said that a person has two immune systems, the one they are born with, and the one you acquire throughout life. Lupus affects the acquired immune system, and Still’s Disease affects the immune system you’re born with. Because I have had some “heavy duty” lupus treatments and little to no response to them, he has a theory that I could have an overlapping disease like Still’s Disease. Like most autoimmune diseases, there is no definitive “test”. He said that the fevers I’ve been experiencing are not a manifestation of lupus, but can occur in Still’s, along with the red painful joints.
For the next four weeks, I will be doing methotrexate injections once a week. I had my first one on Thursday and needless to say, I feel like crap. I am mostly just tired right now, but after right after the injection, I felt nauseous and my head hurt a lot.
There is a medication for Still’s Disease called Kineret. When I see my doctor again next month, we will talk about whether or not the methotrexate has helped, and whether or not we should try Kineret. He told me that if I have Still’s, Kineret works very quickly, and I should start feeling better within days. It’s a daily injection, it’s very expensive, and insurance companies aren’t too keen on paying for it. He talked about making a trade with the pharmacy downstairs, and he could get a week’s supply of Kineret for me by trading Enbrel. After I’ve had a week’s worth of kineret and if it works, he could then make a case for the insurance company to cover it, deeming it medically necessary. I probably looked at him sideways when he said that. I’ve never had a doctor make trades to get medicine for me before.
Methotrexate and Kineret can be used together, so it’s a possibility I could be doing both. I don’t mind doing injections, I’d do anything at this point to feel better. My doctor seemed hopeful, which makes me hopeful.
I really like my doctor. I had been warned by other doctors that he was “arrogant” or “too clinical”, but so far, that hasn’t been my experience at all. He is easy to talk to, and his office has a relaxed attitude. If one medicine doesn’t work, he keeps digging for another answer, unlike my other doctor.