I saw my rheumatologist a couple weeks ago, and we’re going to continue the methotrexate for the full 12 weeks. He talked about adding another rheumatic drug after, like xeljanz or imuran, and the kineret could still be a possibility as well. It will probably be easier for my doctor to persuade the insurance company to cover another drug if he can tell them that we have already been using methotrexate. Some of the other drugs can be used with methotrexate for additional benefit, too.
Lately I’ve been waking up in the night with red hot itchy joints. It’s also been happening in my feet. My evening fevers seem to have turned into early morning fevers. I have the butterfly rash pretty regularly now. I’m having hard time with getting dizzy when I look down for too long, like when I’m crocheting or on the computer. My neurologist actually brought up something interesting, revisiting the chiari diagnosis. He is the first doctor to say that there is some “grey area” when it comes to diagnosing what is and isn’t chiari. My cerebellum is herniated 6mm, but Dr. Batzdorf told me it wasn’t chiari. My neurologist calls it “Tonsillar ectopia” which is fancy for herniated cerebellum. Because my cerebellum is a little low, looking down probably puts pressure on my brain stem, and that’s why I get dizzy. There isn’t really definitive criteria for diagnosing chiari so I’ve seem to have fallen into a grey area category. I do think most of my headaches are from the vasculitis and not from the tonsillar ectopia. But some of the dizziness and headaches I get from turning my head in certain directions for too long I think could be attributed to the tonsillar ectopia. Knowing what I know now about the vasculitis, I’m glad I didn’t go in to get the surgery. The surgery doesn’t have good statistics anyway.
A couple days ago I went to see a Gastroenterologist. I was surprised they had an appointment for a new patient available so quickly. We talked about my heartburn issues, and the medications I’ve tried for it. He is going to perform an upper endoscopy in a few weeks to take some biopsies and check out my esophagus. They’re going to use anesthesia so I won’t have to be awake for it. I’ve never had anesthesia before. I will probably need some form of hydrocortisone for the procedure because of the Addison’s Disease but I have to contact my endocrinologist to find out if I can just take an oral stress dose or if it has to be IV. I also have to stop taking ibuprofen 5 days before the endoscopy to help avoid excessive bleeding, which means no Duexis for 5 days. I believe a lot of my headaches to have an inflammatory cause so I’m not sure how I’m going to get through those 5 days. I skipped a day and a half of Duexis once and I definitely felt it. Also, the Duexis helps with the pain and inflammation in my esophagus. Before I was taking it regularly, I had trouble swallowing certain foods and I had pain bad enough that I couldn’t wear a bra. Now that I take it twice a day I don’t have the pain or trouble swallowing as much. It probably doesn’t help the acid but without it I’m not able to eat certain foods.
The doctor explained that sometimes the acid reflux can be caused by food allergies, similar to how certain allergens can cause asthma. He also talked about certain bacteria that can cause acid reflux and ulcers, too. He talked about the possibility of a hernia also, and being able to check for all these things on the endoscopy. He was pretty good about telling us about all the risks involved, but assured us that he’s never had a problem before in the thousands of endoscopies he has performed.