Hints on different medications-Immunosuppressants, Biologics etc,

[Courage]

Hi,
I was just wondering what different immunosuppressant meds or Biologics wtc people have been on for systemic issues. I have been on Imuran for 2 years but I have experiencing serious issues with my Blood counts. At this time I can't be on Imuran and my hematologist says to try another one. As a hematologist he can't recommend one in specific but he gas agreed to tell me what dose to use and he will also monitor my blood counts etc. I had a good response to IV Cytoxan years ago and I guess they have Cytoxn in pill form. I'm just wondering what others have taken and if they gave helped and side effects etc.
Thanks

[susanep]

I am getting ready to start Imuran, so I am no help here, but sure others will be.

susanep

[Jasper]

I recently started on Rituxan infusions. I had the first infusion on Feb. 25th and the second on March 10th.

I am 4.5 weeks post the 1st infusion and I am noticing the fatigue is a lot less. I have more energy and a lot less fatigue. This is the best I have felt for many months.  I think it is too early to state for sure that it is the Rituxan that is making me feel less fatigued. However, I am cautiously optimistic that it is the Rituxan.

I think I will have a better idea of how the Rituxan is working in a few more weeks.

[Courage]

Jasper it's me Anne. We talked a few weeks ago. I went to Dr Rhodus and he was amazing. He also referred me to an opthamologist at the U of M who specializes in Sjogrens. It was a 3 hour appointment and it took 2 days to get in. It was amazing. My eyes are so light sensitive I feel like a vampire but they have a "tint" specialist who worked with me on what color tint would help me with all types of light sources. I'm getting 2 new glasses tomorrow to try. So I hope soon I can read a book and even maybe enjoy our spring weather. I had 2 doses of Rituxan in the past. I see Dr Fazeli on Wednesday so I have a lot to talk to her about. I wish I could have attended the support meeting but I was just starting to get really sick with a new kidney infection and stones moving around and getting stuck. I also saw the eye specialist that morning and between the appointment and getting sick I barely made it home. Take care. Anne(Courage)

[warmwaters]

I was on 10 mg of prednisone for about 2 years, shortly after my diagnosis.  Definitely helped, but my doctors wanted me off because of side effects.

Tried Cellcept, which made me feel much better, but I quickly got a serious infection.  In general, when I'm immunosuppressed, I get infections very easily, and so my rheumy has been avoiding that path for me.

Just started Rituxan infusions, which will shortly be added to the outlined treatment plans for Sjogren's.   Too early to say if it helps, but others here have seen good results. Also check out the blog "Reasonably Well" by Julia, another Sjogren's patient. She did Rituxan, and wrote a number of articles about her experiences. She's formerly a nurse, and so combines some good medical details with a lot of humor.