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Margaret k wrote: My consultant says that the protocol for Promacta states that the preferred count should be between 50 and 150. After a crash to 1 in 2015 my count has gradually increased to 110 after 14 months on 75 mg Promacta daily. I asked today about the clotting risk but he stuck to his guns and said he would not be reducing my dose unless I got to 150. He is worried that I may crash again and so am I . I think it is not safe for you to be tinkering with your dosage yourself. There is no clear link between dosage and count , you run the risk of a crash. The first step should probably be to reduce to 50 mg twice a week and wait and see what happens but you really need to talk it through with your consultant. I eat anything and everything and drink alcohol in moderation and my count has not been adversely affected.
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Rob16 wrote: The prescribing information calls for increasing the dose with counts <50 and decreasing the dose with counts > 200, so it's hard to argue with the 150 benchmark, especially short term.
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Margaret k wrote: ... At my current rate of improvement it might only be about 3 months before experimental tweaking could begin...
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aero8991 wrote: Hi All,
Speaking of Promacta Journey's I 've been on a solid 50 mg dose for more than 2 years and have always had counts in the 100's+. I thought about tapering back the dosage to 25 mg recently and my doctor was for seeing what would happen. So far its been going well!! My counts are in the 60's range and my doctor wants me to try taking 25 mg every other week. He thinks, knock on wood! I might be able to ween off !! I don't want to get overly excited because this whole ITP thing has been a roller-coaster, but man would that be something !
I wanted to share some good news!
Thanks,
Dan
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poseymint wrote: Hi mom-- I don't want to offend and I could be wrong, but in my humble experience with ITP, I would just like to encourage you to not worry about NOT having bleeding symptoms. ITP and our bodies are always changing, there are so many factors. Is there anything you are doing differently that could be helping your bleeding symptoms?
I don't normally have bleeding symptoms at low counts. But this week my counts are at 52 and I have two bruises! I was surprised, I would have guessed my counts were in the teens. I took Ibruprophen last week so perhaps that caused the bruising? hard to say
Once I went to two different labs for two different doctors. At one lab my counts were 15K and at my hemo's lab my counts were 30K. That is a huge difference to me! but my hemo was not surprised. He said it made sense as there is a big variation between labs. And told me that I should stick to one lab. Also as you said there can be platelet clumping esp in the violet topped tubes.
poseymint wrote: I have been on Promacta several times since 2011 and also Nplate currently. I totally agree with your decision to stay on the 50mg. My counts always drop when I change doses. Give it a couple weeks and they will likely come back up. Thats how it goes with me anyway. I believe its best to find the dose you like and stay with it. I have seen how my immune system will settle down if I keep the TPO dose steady.
All said though, I do think Promacta is a bit of a weird drug- just my opinion. So I understand if you just want off of it. Once I thought I was having some kind of DVT/ vascular event in my legs from Promacta. My counts went over 100K and the skin on my legs turned white like marble! So freaky- I quit Promacta immediately. The color came back in about 24hrs. I saw the nurse, she sent me to a cardio-vascular surgeon who did ultrasound. My veins and arteries were fine. Year or so later I read that "pale skin" can be a side effect of Promacta (?!) anyway, good luck!
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