I have had ITP for about 1 1/2 years and my platelet counts varied between 1K (low) up to over 350K (upper value) with various treatments. I tried Promacta which worked great but had severe reaction after 1 month and had to stop. I then tried nPlate weekly injections but had to increase dosage up to maximum allowable amount of 10 mcg/kg which also worked great for the most part but after about a year with the 10 mcg/kg dose, my platelets dropped to about 5K. Through all of these, when platelet count drops below about 20K I got bleeding events i.e., spots in mouth, purpura, and/or piteachea at various times.
Currently, my hemo dr. recommended Rituxan as the next step but to keep my platelets high enough until the Rituxan kicks in, I also took IVIG every 3 weeks (in my case IVIG lasts 3 weeks). Rituxan finally worked after about 3 months. But I was devastated to see spots in my mouth and piteachea on a leg, along with a platelet count of 14K a few days ago which means in my case Rituxan only lasted about 3 months.
I am so emotionally drained, scared, and losing hope. Please tell me about your experience with Rituxan and answer whatever questions you can that are listed below.
1. Anyone experience relapse with Rituxan as short as 3 or 4 months and was retreated and succeeded the second time?
2. If yes, then how long did the second treatment last as compared to the first one?
3. If multiple treatments of Rituxan were used; anyone have more than 2 such treatments in one year, how many?
4. Do doctors consider it safe to have a few Rituxan treatments per year since mine lasted about 3 months after completing the last Rituxan dosage?
5. I have read that there is a study ongoing now for people who had relapsed from Rituxan with a predictable relapse time, and as a result treated with a "maintenance treatment" after the initial relapse using 1 dose say every 4 months (not the standard 4 weekly doses). So in one year they would receive 4 + 2 = 6 does/year. Has anyone tried this or a similar approach?
6. Anyone tried to control ITP using IVIG alone every month as the regular treatment for a long period and how did it work and is it safe?
7.Has anyone tried Tavalisse a new drug that just came on the market in April 2018 and what is your experience with it?
Very much looking for answers to any of these because I am very desperate.
Karbraver, I have seen some folks here use IVIG regularly when Promacta doesn't work and Nplate fails. As a matter of fact one of them got on the Fostamatinab trial and it worked for them.
Question for you. When Rituxan worked for you did counts only go up to the 40-90 range, or, did they go up to normal range?
Thank you very much for your quick reply. I feel a bit better hearing that you know other people who failed Promacta and nPlate, and as a result use IVIG regularly.
Do you know how often these other people use IVIG (e.g., once a month)? Over how many years? Was it safe for them?
For the case you cite where one of the people got on the Fostamatinab trail, did they provide more information on their experience with it? Maybe if you can give me their online name I could search for their post.
To answer your question, after my last dose of Rituxan, my count still slid down to 14. To raise my count until the Rituxan kicked in, I had to get IVIG infusion which I believe was the primary cause it then went up to 196 within 3 weeks after the last Rituxan dose. As mentioned in my original post, in my case the IVIG lasts about 3 weeks. So after the end of the 3rd week, when the IVIG was no longer effective, my count continued to range between 188 and 260 which meant the Rituxan kicked in and worked well. But to my great disappointment, this high range only lasted close to 3 months after the IVIG wore off and the Rituxan kicked in, then my count dropped to 14K which meant the Rituxan no longer worked. So my hemo dr. is proposing to start another round of Rituxan and see what happens. I have read that for a subsequent round of Rituxan, typically if it works again, the duration for its effectiveness would be about the same as the initial round. Have you seen any information about this situation?
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2327
Kar - I know it's difficult in situations like yours to find a way to manage ITP. It's also frustrating. Please try to also look at the big picture and think about the affects all of this will have on your health long-term. Personally, I think that maintenance Rituxan is a risky way to go. Managing ITP with IVIG is not the best solution, but it can buy time until you come up with something better. Have you ever tried steroids with IVIG?
Imho your case seems odd. Maybe I don't really understand what has happened well with your treatments. Perhaps you've taken steroids alone before? How did that go? The two users I've mentioned did not respond well to steroids.
I had my first round with Rituxin 9 years ago.It kept me in remission for 8 years.I had a second round 6 months ago.I had no luck with IVIG.My numbers are falling (get a blood test next week to see where I am.)I had asked my hemo/oncologist if I could have Rituxin again if need be.She said yes after 3 months have passed between treatments. they want me to try Nplate or Promacta but I'd rather stick with Rituxin.I had very few side effects with it. I have been dealing with ITP for 30 years.I had my spleen out and it didn't work,I got cancer in the 90s and when I had chemo for that it knocked out ITP for over 10 years. Good luck.
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