It’s been around 18 month since the diagnosis. First they started me on Dexametasone for pulse treatment. By Tc base level is 1k. The cortisone got levels up to around 40k but not lasting. Next was nPlate. It worked to get Tc up to 60 with huge swings. Had to gradually increase the dosage to max allowed. After 6 months or so it started to not work anymore with levels in the teens even with the weekly injections.
We switched to Revolade. 75mg, so Max dosage pretty much from the start. This went on for 4-5 month before this also did. It do much anymore.
We then added some Spiricort to the mix, like 20mg and the combination gave a pretty good result. Tc in the 40k range, still variable. The issue was that I started to suffer from weak leg mussels after a while. Both Spiricort and Revolade have that as side effects. So unclear which one of them was responsible for my weak state.
I should add that I have also received IVIG infusions intermittently for some Neuropathy in my leg nerves (seems to also be some autoimmune issue). The IVIG last about 3 weeks for me and get my platelets up to 60k in combination with nPlate or Revolade.
So I discontinued both and predictably my Tc levels dropped to 1k. When I have these low counts I am super tired. Petechiae on my foot and legs. Sometimes also on my face. No bleeding but at extremely low levels blood blisters in my mouth.
I was getting my COVID Moderna shots and we waited 2 weeks after the second shot to start the 4 course Rituximab treatment.
So last Thursday was round one. No side effects during infusions. My platelets are 1k and today I started taking 50mg Revolade to see if this does not increase the count away from the critically low levels. Thursday is round 2 of Rituximab.
I read it take like 5 weeks before potentially seeing effects if one is so lucky to respond. Would be interesting to see what other people experienced during their Rituximab treatments. When did your count elevate? Did you feel any side effects. I am just super tired but I think that is the low count rather than the Rituximab.
So long. Will keep you updated. Would be interesting to see what HAL group I seem to fit in. I was not able to figure it out on my own. Maybe that would give me some indication to see if Rituximab might work for me.
Dx: 2006 Dex pulse about Q3-4 weeks for a few months. WinRho x 3.
Splenectomy 2007: 18 months of tx free remission
IVIG followed by Rituxan 2008: lasted 10 years!
IVIG followed by Rituxan 4/2018 lasted til now 2/2020.
Currently: restarting Rituxa
Thank you received: 0
Hope this helps-
Copied from: haematologica.org/article/view/8926:
"Three different patterns of response can be distinguished: a first group of patients respond rapidly, within the first month; in the second group, the platelet count starts increasing after 3-4 weeks, and a CR is achieved within 8 weeks after treatment; in the third group of patients, the platelet count increases very slowly, only reaching normal values 3 months after therapy."
I have had two rounds of Rituxan, one put me in remission for 7 years and one for 2.5 years. I will probably start my third round next week. Both times, I took Dex pulses while in the four week treatment to keep my platelets up while waiting for the Rituxan to work. It usually started working within 1-2 weeks of the end of the four weeks for me. I hope it does the same for you!
I wish any of those scenarios was mine. Jumped after first treatment to 115. Dropped after that. I was told it could take up to 8 weeks to work. That was the end of January. Still waiting. Now on Tavalisse which is wrecking havoc w my digestive system.
Quick update. I was never able to get of some tpo medication. By platelets have been as high as 266 but when I went off the playlet production increasing meds they crashed to single digits. They have been wildly swinging even with no change in meds. I think my body fluctuates between two states. Attacking platelets and then not doing so. If it stays like this I will try to do another course after 6 months. I am reacting to it. Just not enough. Will keep you posted.
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