I haven’t posted in a while and it is largely because I am back at school now – which also means back to compulsory writing and me having much less free time! Penny and I are doing well. She is settling in to her new life as my dog guide quite nicely. We have a routine and we are both happy with how things are going, I think anyway! I feel, judging from the cuddles and love, I can make that claim for Penny too! She also LOVES her new food and there is never any left over in her bowl like there was at the beginning with the old food.
Health wise I am continuing on the road to control of my Behcet’s disease – at least I hope. The colchicine I was put on in December, which is the first line treatment because of how benign it is in terms of action and side-effects, failed for me. I had serious side effects and I compared it to being the flu in a pill. I lasted two weeks on it before I stopped taking it because I had side-effects and no symptom relief at all.
It has been a few months since then and I went back to see my rheumatologist yesterday, or well the one that specializes in vasculitis and Behcet’s disease. He had wanted me to see my GI again before seeing him, and I had done so, and she confirmed she didn’t think it was Crohn’s and she supported the Behcet’s theory. With this information we moved on to the next line of treatment for Behcet’s, which is also used to treat Crohn’s sometimes. I am back on prednisone, though at a much lower and more tolerable dose of 15mg for two weeks, then 10mg for 2 weeks, and then down to 5mg as a maintenance for a while. At the same time we started me on 100mg of Imuran a day and we may increase it to 150mg in 6 weeks at my follow-up.
I will be honest, I am not super keen on these medications. Prednisone is not something I tolerate very well but at this dose it will hopefully be okay. Imuran is also not my idea of an awesome medication, and I have had some side effects from it in the last 24 hours but hopefully those will pass with a few more doses. I am really hopeful it will control my symptoms though and I know I have to patient with the Imuran because it does take a few months to really work. I know last time I was on prednisone, all of my ulcers cleared in days. If I could have a similar response to it this round that would be amazing. The hope is that this will all bring my CRP down and the prednisone will kick my system into gear so that when the Imuran kicks in I can stop the prednisone.
My doctor said that in the event this doesn’t give me symptom control, of both the ulcers and the GI symptoms, then we will look into getting me onto an anti-TNF medication. I am really hoping I can get good control for now with the Imuran though because the anti-TNF drugs are really expensive and all are either injected or IV infused. Most people apparently self-inject them, except of course the IV ones, but I can’t do that. I am not really afraid of needles, I just have a lot of anxiety around IM and subq injections. IV’s and blood draws are totally fine. I could probably start my own IV or draw my own blood if given the opportunity, but I couldn’t give myself an injection. My plan, if it comes to that, is to make my family doctor do it for me. She already gives me my B12 every 2 weeks.
I have been feeling pretty crummy for the last few weeks. I got the flu and bronchitis and it hit me pretty hard and in the aftermath I am dealing with a lot of fatigue and additional pain. I haven’t been able to really bounce back. I am kind of hoping the prednisone helps that to happen! Another one of my concerns about the Imuran and prednisone is that they are immunosuppressants and I am now at a risk of more acute infections and having them hit my harder. My rheumatologist was clear that with even a slight sign of infection, cold, or anything else, I need to go straight to my family doctor and get checked out and proactively treated. It is just another thing to worry about.
I know I sound kind of like I am complaining right now and I feel a bit bad about that. It is just a bit upsetting because this is exactly where we started at the beginning of the summer – on Prednisone and Imuran. Then I was taken off of it and left to suffer with my symptoms for 6 months, and now we are back to it. A diagnosis helps and I am so thankful to be able to name it and say “I have Behcet’s Disease” and to be taken seriously now.
In other news we are now looking in to getting me a power wheelchair. I have injured my shoulders and I am trying hard to keep the pain under control but it is hard when I only use my arms to move because I can’t let the muscles and joints rest at all. It is also freaking impossible to move in the snow in a manual wheelchair and on manual crutches. My doctor and I agree that it is time for me to have access to all of the tools that I can have for mobility so no matter how I am feeling in a day I can get around. I am also really looking forward to be able to take Penny out for walks and not feel guilty for making her miss them on days when I can’t do it because of pain.
It was hard for me to accept the idea at first and people who know me know that I have been talking about it and thinking about it for a long time. At first I saw it as a knock to my independence and now I am able to see it more as an addition to my independence. I will be able to do so much more on days when I am having a lot of pain or fatigue. I will still have my manual chair and I can still use it when I can and that makes me feel a bit better. I am not limiting myself with this decision, just opening more doors. I also think it is hilarious that everyone asks me if the chair I am going to trial comes in pink. Sadly it does not – only blue, red, orange, silver and black. I think if I go with that chair I will get blue. Perhaps I can have it custom airbrushed with pink and purple butterflies or something!
Hopefully it won’t be so long before the next update!
Feisty, Deaf and Disabled 