So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess.
Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause a lot of coughing and some gasping for air. My GI encouraged me to address this with neuro as she thought it may go with my other neuro issues but after being dismissed so much after my last appointment I was hesitant. Finally my GI decided she was not letting me have anesthesia (I was due for an endoscopy with botox at the beginning of June) until I had a barium swallow study. Barium is the worse but at least they mixed it with chocolate syrup (Perks of going to a children's hospital at 21). The study showed some issues called penetration (basically the barium started going in to my trachea but I did not fully aspirate), but it is not severe enough to be considered unsafe for me to have liquids. GI is even more convince it was neuro-muscular. When I contacted neuro he made me come in to talk about it and had not even looked at the results, insisted I was fine.
On the topic on neurology the IVIG was denied as was the appeal. After the swallow study I had a terrible appointment with the neurologist at Penn. I felt like he gas-lighted me and since the IVIG appeal was denied he had no interest in me as a patient. I was pretty over neurology at this point. However at my last PCP appointment while the fellow seemed to get my lack of desire to go back and how exhausted I am of it all my PCP walked in and basically said I needed to go back to neurology and had the name of someone at Jefferson to see who has success with fighting insurances for IVIG. I am not thrilled about it but I did make an appointment. In the last week a few new neuro issues have popped up so I guess the appointment is a good thing.
Meanwhile in rheumatology land after IVIG was denied and the ulcers where popping up on the increased dose of azathioprine Rituxan was ordered. I think in some ways my rheum was happy that IVIG was denied because it meant I would agree to Rituxan While both these treatments are used in Sjogren's there is no info on IVIG in Behcet's, Honestly there is little info on Behcet's treatments in general. Anti TNF inhibitors tend to be a good choice but have been shown not to help Sjogren's. Rituxan has help Behcet's in a couple case studies although no extensive research has been done. However Rituxan was denied and so was the appeal. At this point I gave up on it but since my rheumatologist is amazing and helped me fight the insurance company we went to external review.
While we waited on the external review which can take up to 45 business days I still had this dream of not being on steroids for the rest of eternity. My amazing rheumatologist agreed it was a good idea to start thinking about alternative treatments even if they were less desirable. He prescribed Cellcept, which is generally used as an anti-rejection medication in transplant patients but is sometimes used in Lupus or Sjogren's (because our body is rejecting itself and all). However this medication can have some bad GI side effects and if anyone is going to get them it will be me. We started slowly at a fourth of the full dose but by the time I got to half of the dose things went downhill fast. In the week and a half I was on this med I lost 10 lbs and landed myself in the hospital. I spent about three days inpatient but thankfully it was mostly a weekend so I only missed most of work Friday.
The day after my first dose of Methotrexate I received a phone call from the infusion center to schedule my Rituxan infusion. A few days later a received a letter from the company that was doing the external review saying they had overturned the insurance's decision and they had to pay for the Rituxan. After I had spent many hours on fighting this as it really is my best treatment option. I am planning on writing another post about the process.
There are still a couple other things going on but this has been a long post so I am going to leave it here. Congratulations if you got this far!