Rituxan

I have had ITP since 1998. For the first 6yrs my count had been around 90. Then for the next 4 yrs my count dropped to 60 area and pretty much stayed in that range. Then for a couple of yrs it kinda just bounced up to 90 down to 30. Since 2010 I have been in the 30's or below. It had went as low as 14. That was until yesterday when I did my weekly lab and it came back with a result of 11. Rituxan is the new treatment my doc wants me to do.Let me say first my Doctor has really worked with me and he listens to what I have to say. I let him know that I hadnt heard good things about Rituxan, and that I really didnt want to start it. Yes Im still on prednisone, dosage just got upped. Is their anything better than Rituxan? Those side effects really sound terrible. Basically if there is 6 side effect, I will get at least 4 of them. I have been working hard not to have my spleen removed. So far so good.Seriously thinking holistic, vegan diet. Thanks Christina

What side effects are you thinking about with Rituxan? It seems that a very few people get severe reactions (not really side effects) that could include serum sickness, strong allergic reactions. Most people seem to have very few side effects, sometimes none.
Erica

The list of side effects for Rituxan is long and scary, but most people do fine with no side effects. If there are side effects, most occur during the infusion and are controlled right away.

I did have serum sickness which is rare, but other than that, it was easier than Prednisone. I also had great remissions from it.

Rituxan didn't raise my counts, alas, but I suffered no bad side effects either.

Thanks for you're input, hearing about real people going through this and comeing out fine,makes me feel better.Personally I am sick of being sick.

I had Rituxiban infusion therapy for a short period of time. I thought it was awful. they loaded me up with Benadryl and then gave me the Rituxiban. It took 6 days before i felt alright. So after one good day I started back on another treatment. But failed for me.. My levels dropped to 16. And every time I would slightly scape myself I would begin to ooze from the site.

I then began receiving N-plate. The weekly shots allowed me to get my levls up to 120. I then had 2 operations within 2 weeks. It has worked well for. I now receive a shot every 3 weeks. My levles are now around 62 to 86. I do notice that I feel better for the first 2 weeks. but i then feel the drop of energy as my platelets levels drop off. You may want to check on N-plate to see if it works for you.

My first round of Rituxan back in 2005 I had no problems but the 2nd round in 2008 I had adverse reactions and was unable to continue with the treatment. Everyone is different though. I wish that I could have continued with Rituxan because it did raise my platelets for a couple of years. Right now I am on prednisone (which I HATE) and Imuran which is supposed to treat my lupus which in turn help with my platelet count. So we shall see. Good luck to you. Its always nice to ask around how others have experienced different medications.

I had Rituxan in 2006 and got a 4 1/2 year full remission from it. I had side effects during the infusion, itchy throat, chest pains that were controlled. I just started yesterday with my first of 4 Rituxan treatments. I did again have chest pains and itchy throat-I am like you very sensitive to things and always react. But, even though I'd have to say yesterday was a bad day i did go through with the infusion and it turned out okay. I feel like it is much easier to deal with a few bad days during Rituxan treatment than constant problems from the prednsione. Dont read the side effects from the rituxan site, it just gives your body ideas! If your doctor has experience with Rituxan they will know how to handle anything that happens and it isnt that bad.

Kasha,
How is the Imuran going? How long has it been, any results, and what side effects? I also had great results from Rituxan, but can't use it any more, so Imuran will be next if I need to treat. Dr. Lieberman said success with Rituxan strongly predicted success with Imuran and that patients should only need I think six months of Imuran to have another sustained remission.
Erica

Imuran has actually been pretty good eklein. I am only on one pill a day (50mgs) she said she will raise it if need be once my body gets used to it. I had some stomach cramping the first week, but that was about it, not even sure if it was an actually side effect). I am having blood work done on Thursday, so we will see how my counts look.

I am hoping that while on the imuran I can eventually come off of the prednisone, but we will see (baby steps ) Remission would be a beautiful thing. My little Sis has Lupus (affected her kidneys) and after 2 years, her docs seem to think that she is remission, which is totally awesome. She is getting married next month and they hope to start a family soon.

Thank you everyone for all your advice and examples of what you went through. I was to do the Rituxan treatment on Tues. , but asked if we could wait and get my weekly count done to see if I went up on my numbers. Well I was lucky my count went from 11 last week to 39 this week. I figure even if my Dr. wants me to do the treatment, I feel that my count is in a better area. Thursday is my appt with my Dr. and the discussion of what to do. I guess I should mention that I'm on 40mg of Prednisone and 150mg of Levothyroxine, for Hypothyroid. Thanks Christina