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Eltrombopag Update 8 months 4 days ago #70974

  • ImPatient
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From today on only 1 x 25mg per week. Count yesterday was 153000. So glad, it's my birthday, and that is a great gift.

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Eltrombopag Update 8 months 3 days ago #70985

  • mrsb04
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Happy birthday, great news about your count.
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Eltrombopag Update 7 months 6 days ago #71136

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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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Eltrombopag Update 7 months 6 days ago #71142

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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.

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!
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Eltrombopag Update 7 months 4 days ago #71158

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Thanks momto3boys! They went higher up and more stable when I stopped eating vegan (was strictly vegan 17 years, and vegetarian before). Might be coincidence, but my hemostasiologist & pharmacists said there might be something to it. Hematologist doesn't have an opinion on it, no evidence. We'll see how it continues...

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Eltrombopag Update 6 months 2 days ago #71311

  • ImPatient
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Thrombocytes were 123000 on Tuesday. I was supposed to try stop my meds today, because I've been in the 150000s for several weeks on only 1 x 25mg Promacta per week, but now I'm not sure. Maybe coincidence right. I was almost convinced my thrombocytopenia was caused by being vegan so long without watching my b12 etc. Was...
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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Eltrombopag Update 6 months 2 days ago #71313

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Your current count is still well into the range of normal platelets. Since you are only taking one pill a week, is it possible for you to taper down to 1 pill every other week? Or 1 pill every 10 days or 11 days or something like that? Try to space them out even further and see if your count remains stable. Since your counts are very high and you are experiencing some symptoms, I personally would be pushing hard to increase my dosage spacing even if your doctor doesn't want to take you all the way off of the Promacta.

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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Eltrombopag Update 6 months 1 day ago #71314

  • ImPatient
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Hi Momto3boys!
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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Eltrombopag Update 5 months 2 weeks ago #71399

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Another update: Yesterday my count was 103000. So a bit less again. I'm still not supposed to take any meds to be more certain what is really a side effect and what another issue that needs further looking into. Will get blood tested on the 28th, but probably not take the meds for another 4 weeks.
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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Eltrombopag Update 5 months 6 days ago #71608

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Platelets yesterday: 101000. Diarrhea only 1 x week. Vomiting & headaches one day, but that seemed unrelated. Trying another month without meds. Still some pain and overweight, but all in all much better. Much less nausea and my ankles don't look like tennis balls anymore, I actually fit into some normal shoes.
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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Eltrombopag Update 3 months 4 weeks ago #71701

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Count a couple weeks ago was 87000. This week is my first with no diarrhea at all, I can finally go to places again, but I feel super tired. Hematologist suggests trying Doptelet or Tavalisse if counts drop further because I had so many side effects from Revolade. When I was taking it daily I had diarrhea daily, felt like my spine was breaking, joints kept hurting and moving out of place etc. But from what I see the side effects of Doptelet and Tavalisse seem to be the same... Well I'll wait if my counts will really drop that low again, hopefully not.
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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Eltrombopag Update 3 months 4 weeks ago #71703

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Glad to hear that your counts are holding in a safe range. I just wanted to say that I've taken Revolade, Doptelet, and Tavalisse and had VERY different side effects with all three. My worst side effects were on Tavalisse (weird neck rash, horrible blood pressure spike, GI side effects), and I don't have any noticeable side effects with Doptelet. I had lots of bone/body pains with Revolade/Promacta.

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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Eltrombopag Update 3 months 4 weeks ago #71704

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That's validating to hear what effects you had and that they weren't as bad with some meds as with some others. I often get the impression when I talk to my doctors that somehow I shouldn't feel as bad as I do. Seems like Doptelet could be more stomach-friendly already because you don't have to take it on an empty stomach... My pain was bad but what really kept me from doing much at all was having diarrhea for several hours several days a week and not knowing when I would get it. I feel super tired and weak this weekend but maybe it's a coincidence. New blood count results this Monday (from Friday, I'm at a good hospital but the machine is a bit inaccurate so they send my blood to a different place). I'm always a bit afraid as I live alone and on NPlate I really could barely breathe for a few hours, hopefully nothing like that happens again. What really bothers me but is a lesser problem is that I gained 30kg all in all (about 10 rapidly on Promacta) and still seems I can't lose it.

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Eltrombopag Update 3 months 3 weeks ago #71705

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95000 last friday!!! Seems my counts are stabilizing without meds. I think that not eating vegan anymore, b12 and d helped and I'll continue to do that and see what happens. I remembered that in 2017 I already had somewhat low but not concerning platelets, at that time I didn't have antibodies yet and the doctor then told me maybe it can be fixed with just b12 which I hadn't taken seriously enough at the time. Later in 2020 however there were antibodies as well as decreased production.
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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Eltrombopag Update 3 months 3 weeks ago #71706

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Well that is good news!! I hope your count continues to be so good AND without meds!!
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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Eltrombopag Update 3 months 3 weeks ago #71710

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Hi Mel,
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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Eltrombopag Update 3 months 2 weeks ago #71731

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Platelet count was 44 on August 12, just found out. That means they dropped 50 from August 6 (95000). Who knows how much more until this week. I can't see any signs of excessive bleeding but noticed my sleep schedule is way off and I'm very tired. I'm very worried about it, because in the past when my count dropped that quickly, it didn't stop. I don't have anyone close where I live and if I have to go back on Revolade it means staying at home alone because the side effects have been so bad for me. I was hoping so much that just not eating vegan anymore would be the solution. It seemed like it... Perhaps they counted wrong? :( I know correlation isn't causation, sometimes counts stabilize when you're on Revolade for a year...

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