I finally saw a rheumatologist today. He believes that I have something called dermatomyositis, which is an autoimmune illness characterized by muscle weakness and a variety of skin rashes. He started me on a medication called Humira, which is a biologic that is injected, weekly at first then biweekly. It works well for about 70% of the people. For now, I will continue taking prednisone as well, and we will reassess in a month. If it works well, then we will taper off the prednisone. It's a good drug in that it doesn't cause any allergic or immune reactions because it's based on proteins already present in the body--it binds to the problematic antibodies, taking them out of commission without disabling my entire immune system the way some drugs can. I will be more susceptible to respiratory infections, but he said it should be nothing I can't fight off. If it works, then once the illness is in remission, then I will stop taking that medication and take something else that will keep me in remission, and hopefully that will be the END of it. He says it is a potentially serious illness that he is treating aggressively since he doesn't want me to lose ground with my muscles getting progressively weaker, but that he doesn't have any patients with this illness that aren't OK.
The only other problem could be that my insurance won't want to pay for this EXTREMELY expensive medication, or will want me to try methotrexate (a drug used in conjunction with chemo that is more toxic with more side effects and not compatible with breastfeeding) first and prove that it doesn't work. The dr. gave me samples to get me started.
If the Humira doesn't work then he will suggest infusions/transfusions of immunoglobulin, which also works well but is a hassle to get the infusions.
The dr. also ordered a chest xray, a mammogram, and a colon cancer screening test, because some people who present with dermatomyositis also have cancer. He emphasized that this was a small risk in my case (less than 10%) because those people tend to be older men, but he needs to rule it out. He also ordered an EMG to assess my muscle weakness and determine if it is being caused by the steroids or the illness. He thinks it's the illness since I'm not on a really high dose of steroids and I haven't been on them that long. He also put in a standing order for monthly labs to measure my muscle enzymes, which are moderately elevated and have been rising despite the prednisone.
That about covers it. So everybody please pray that I am in the 70% that respond well to Humira!
Not Having Fun
4 weeks ago