Thursday, October 8, 2009

Rheumatology consult... Imuran might not be working

Had my latest Rheumatologist visit last week. In general, mostly bad news. The inflammation markers on my blood are very high, having increased a lot from my previous blood test. In fact, I haven't been feeling well the last few weeks, feeling worse as every week passes. I've been feeling weaker, and what worries me the most, the cough is back, and I don't know what that means for my pulmonary fibrosis. Talking to the doctor, it seems the Imuran is just not working, and he's thinking of other treatments.

However, seeing that Imuran is probably the safest choice in terms of side effects (both the annoying kind and the harmful kind), he wants to give Imuran another chance. He gave me a jolt with high dose IV steroids, hoping that would help Imuran kick in. But I don't think it is working. Since then, I've started coughing a lot more, and I'm just worried. His next options (in order of preference) are:
  1. Mycophenolate mofetil (Cellcept).
  2. Rituximab.
  3. IViG.
So, hopefully, one of those will help me. In the meantime, I continue on high dose steroids, which is another problem. And I'm really worried about my lungs. I've already lost about half of my lung functions, so I don't want it to get any worse.

Really looking forward to that next visit, hoping that things will improve.

1 comment:

Michael Abbott said...

I'm very sorry to read about your condition, and I wish you all the best addressing it. I hope writing about it feels helpful to you.

Reading your recent posts, I can only admire your tenacity and willingness to share what you're going through. These are the times when family matters most, and it sounds like you have a truly wonderful one in your corner.

Take care.