Dx 12 years ago with ITP. Had IVIG, steroids for 7 years with fluctuating numbers (from 7 to 120). Was on Promacta 75 mg for over a year with great results for about 4 months, then down in the tank again. Having my fourth Rituxan tomorrow; platelets at 20, down from 80. Still on steroids, also.
Can anyone relate?
Prior to being diagnosed with Aplastic Anemia, I was treated for ITP for a few years with various treatments and several trasfusions and infusions, one was rituxan. I was very sensative to the Rituxan and I had to do a very slow infusion, about 7+ hours. It did not help my case, in fact I progressively got worse. When I had my last bone marrow biopsy, I had a dry tap, was basically empty. What helped me was ATGAM, however I had a bad reaction to the tachrylimus and ended in ICU with fluid in my lungs and heart distress. That was overcome quickly. I have been stable since the ATGAM. It has been 3 years
Yeah relates to my 7 yrs journey... now am still on Promacta with count around 20k... my hemo don’t want to just keep changing medicines as long as it’s above 10... I have given up and trying some elimination diet. From 24 days... . though it’s not helping yet... just making me feel good of eating healthy...
I tried everything for 9 years till my last resort was taking my spleen out before you do, do the indium test to make sure it’s the spleen destroying platelets not the liver make sure find out in case your leaning that way!
Thanks! I'll remember that. Platelets at 16 after 4 rounds of Rituxan. Now I'm waiting 30 days to see if it was successful at all.
Rituxan has a 50% success rate, I was one of the failures however there have been several members on the site who had very good results. I’m now on weekly labs and Nplate injections to maintain my platelets between 15 to 60K. I’ve been on this schedule since 2010 and I’m running out of veins but no other side effects. I’m able to maintain a fairly active life style as lone as I avoid skydiving, reckless, high speed driving and bungee diving. As you know there is no cure only remissions but research is on going so hang in there
still a bit new to this!
Avatrombopag or should I try living with a low count? Does anybody have experience of either please?