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Eltrombopag Update
- ImPatient
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- mrsb04
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- 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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- ImPatient
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- momto3boys
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Not bad! Looks like you are having some good, consistent counts. Fabulous numbers to achieve with only one Promacta pill per week! You may be one of the lucky ones who can get all the way off the medication and maintain good counts. Fingers crossed!ImPatient wrote: Count the day before yesterday: 143000. First week in a half year or so that I don't have 3-4 days several hours of diarrhea. Hoping my count won't drop because my joints, spine, sternum still hurt a lot and make cracking noises with almost every move. I'd be worried if I had to increase the dose again. Continueing 1 x 25mg Promacta per week till the end of May, then new test.
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- ImPatient
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- ImPatient
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I still keep getting diarrhea, and I still think it's from Promacta. The doctor says they can't imagine my side effects are still that bad with this little medication. But I also still have quite some bone pain, though not as much as when I took more. They want to do a coloscopy, but I want to wait and see if I can still lower or stop taking medication. It's been a long time, but I never had this many stomach issues before on Promacta (and back then also Dexamethasone and the usual things we have to start with).
Well... let's see what happens. At least I'm still quite high on a really really low dose, that's quite lucky. Though I barely go outside except in the mornings when I haven't eaten yet when I really need to be somewhere like a doctor. I would love to just spend a bit time outside and see friends sometimes.
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- momto3boys
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There really isn't a ton of difference between 150k and 123k. My counts fluctuate as well and can have changes on the order of 20k-30k between lab work (well, at least now they do since I've been in a higher range on the Doptelet. They would fluctuate when they were lower as well, but the fluctuations were numerically smaller because the overall counts were lower and there weren't enough platelets to swing dramatically). Congratulations on maintaining such a high count with so little medication!
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- ImPatient
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Thanks for the reminder that 120 & 150 isn't so different. Maybe I got a bit too scared yesterday, because I also used to be quite low with a lot more problems than I have now.
My doctor said today, I should not take any meds till June 15th and we'll see if some of the side effects were actually side effects and how my platelets are doing.
I'm still sceptical as to whether the diarrhea would disappear this quickly even if it is a side effect. It started slowly, my guess is my stomach would need a while to recover. But I'll write an update when I know.
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- ImPatient
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So far I have a lot less pain (mainly in the spine and sternum), and I'm not constantly nauseous. Diarrhea is still about the same amount of days per week, but seems to be over more quickly.
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- ImPatient
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Bit irritated the assistant keeps saying my pain and diarrhea is psychosomatic. Both are common side effects of Revolade/Promacta. Both are getting better now that I'm not taking it anymore. Sternum pain f.e. gets worse when pressing, so how would it be psychosomatic, also I have almost no stress at the moment. I'm guessing that the reason I still have a bit pain now is that the body needs to recover from taking it so long and that doesn't happen within a couple days right.
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- ImPatient
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In case anyone ever has this problem too, I wanted to post that my hematologist said that diarrhea wasn't from Revolade, because it didn't stop immediately when I stopped Revolade. But now he agrees it seems it could be from it as I hadn't changed anything else and it decreased little by little after stopping it. I also still have edema that are decreasing. I can finally feel my ankles again and I'm at least not gaining more weight, but not losing weight yet either. (I'm glad I didn't undergo further exams like colonoscopy, because it wasn't necessary at all)
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- momto3boys
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Just throwing it out there that you shouldn't assume that you will have any particular side effect on a medication without trying it. Hopefully your counts will stay above 30,000 for the future, and you won't need to worry about any kind of treatment at all!
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- ImPatient
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- ImPatient
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Yesterday I was able to go out with friends without being scared I would get sick. I was only a bit weak, but also not too much pain. 5th time only I had been out in a year! (There are still lots of things to do here in spite of Corona, like meet up in parks with distance or museums are currently open and not too crowded) Anyway that made me so happy I almost cried.
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- MelA
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Are you wearing a mask when you go out? Even though I have had my 2 injections I am wearing a mask again - I don't like what I hear about the delta variant and I do have a grandson who isn't old enough to be vaccinated so I don't want to chance giving him the virus or variant.
Enjoy your new found freedom!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- ImPatient
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Good to hear you're staying safe. What did you hear? Because I'm hearing lots of different things even from doctors...
I'm mostly at home and even order most of my groceries. When I'm close to people or inside I wear an FFP2 mask.
I started getting diarrhea 3 x/ day on Monday again. Maybe I should have a colonoscopy then. It's been about 2 months since I quit Revolade, and was fine the last 2 weeks and suddenly I get sick again.
I was gonna try to start working in a couple weeks, but maybe I'll take a different job at the end of September then. I obviously can't work when I'm on the toilet half of the time.
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- ImPatient
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