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General Remission Times with Promacta

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10 months 1 week ago #73332 by ITPguy
Hello all,
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? 

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10 months 1 week ago #73333 by MelA
Replied by MelA on topic General Remission Times with Promacta
I know nothing about promacta but I'm sure someone who does will see your post!
Just wanted to say congratulations and I really hope that your count stays up there!
Keep us posted!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • mrsb04
  • Away
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 months 1 week ago - 10 months 1 week ago #73337 by mrsb04
Replied by mrsb04 on topic General Remission Times with Promacta
ITP Guy
My haemo told me she has a patient who only takes one tablet a week, I don't know the dose though.
 

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9 months 1 week ago - 9 months 1 week ago #73363 by ImPatient
Replied by ImPatient on topic General Remission Times with Promacta
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)

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8 months 2 weeks ago #73378 by ITPguy
Replied by ITPguy on topic General Remission Times with Promacta
Thank you for sharing. I am still the same platelet level after 2 months off, so all good so far! 

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7 months 4 weeks ago #73389 by Daryl
Replied by Daryl on topic General Remission Times with Promacta
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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