I am a mid 30 year old that was diagnosed with ITP about 9 months ago, when I had a CBC with a platelet count of 1. I was completely refractory to steroids (dex and pred) and IVIG only had marginal effects. I got on promacta about 8 months ago and had immediate success. My platelets have stayed pretty stagnant, around 150, even with reduction of dosage from 50 mg, to 25 mg, to 12.5 mg every few days.
I am now off the medication completely. Has anyone experienced long term remission due to promacta, and is it possible it is permanent?
I took Promacta/ Revolade 25mg per day for about a year (for more accurate times I can look some other time not now). Then was able to take one every two days, and less and less. 2 years without meds, count approx. 100. Just now dropping again, not sure if I will need medication again. To be seen the next weeks.
There have been some guesses what might've had an effect, but no evidence... 1. I had been vegan 17 years and when I started eating fish again my counts went up (b12 & other things that could contribute to platelet production and inflammation). 2. I didn't know I was gluten intolerant until a doctor had the idea to test not only transglutaminase 2, but also transglutaminase 6 and dgp. The latter two showed, I shouldn't have gluten. Been healthier since I stopped eating that. Not sure if it affects my platelet counts, but gluten intolerance has been linked to thrombocytopenia.
(I'm 43 now btw. Took dexamethasone, prednisone before, only high doses worked to get the counts up a bit, NPlate had terrible pain and trouble breathing)
Man that's awesome. I have seen research showing that some percentage of people can achieve sustained remission off-treatment with eltrombopag. There is a theory that in addition to increasing platelet production the drug might also restore immunologic tolerance.
These guys have a specific tapering protocol and claim a success rate of 70% off-treatment!!
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