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Eltrombopag & menstruation 1 year 7 months ago #68898

  • ImPatient
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I've been taking Revolade since February now, and this is the second time I'm almost not bleeding at all (few drops a day, couple days). Usually, my period is like a clockwork and at my current weight really heavy. I didn't make any other changes except taking Eltrombopag. Could it be caused by that? I'm seeing a doctor at the end of the month, I'm not that alarmed, just curious, if anybody else has experienced this, too.

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Eltrombopag & menstruation 1 year 7 months ago #68904

  • Carcamoc10
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Hi, so before reading your post I would never have made the connection between Eltrombopag and lighter periods, but I actually think that might be plausible! I took it from January 2019-September 2019 and it made my period suuuuuuuper light (but only when my platelets were above a certain amount). I have been medicine free since then & my period has gotten heavier and more normal now...a very happy medium between my hemorrhaging period before and the almost nonexistent period I had for a while (possibly because of Promacta?) If I remember, I’ll get my hemo’s thoughts on it at my next follow up!
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Eltrombopag & menstruation 1 year 7 months ago #68909

  • ImPatient
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Hi Carcamoc,
Good to hear you had a similar experience and you seem to be doing well. I'd be interested in hearing your hematologist's opinion, if you ask and I'll post what mine says too in a couple weeks.
When my body does something differently I'm of course always a bit worried. Last time my blood was taken I was at 143. The few times before it was always above 100, too. I was actually talking to my hematologist about lowering my dose. But I have only been taking 25mg for a short time. I don't want to end up at the ER again or have to take Dexamethasone or something.
I was also worried that maybe it doesn't have anything to do with the med, because I just turned 40 and I actually might still want kids... But it would be a bit strange for my period to go from being totally regular and heavy to almost not being there so drastically, if it was due to age right.
Perhaps the body is working so hard to produce more platelets that it doesn't have enough energy for menstruating? I don't know much about such physical health stuff, but I heard before that if other body functions are needed excessively then ones period might stop for a while.

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Eltrombopag & menstruation 1 year 7 months ago #68911

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
I started my menopause in my late 30s many years before I developed ITP. My periods tailed to a trickle for quite a while before they stopped. My GP sent hormone level tests off as he didn't believe I was starting so young. Maybe yours or your haemo could order some for you. At least you will know one way or the other
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Eltrombopag & menstruation 1 year 7 months ago #68914

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Oh I hope that's not the case for me. But yes, it would be good to know either way. Then at least I can adjust. I also just sent my hematologist and gp pics of my rashes in my face, I still think it's connected to my thrombocyte problems and it's not been that visible when they saw me. My EBV test looks like I might have chronic EBV, but I'm of course not a doctor, I can only piece together what I think I read online. I had a lupus test, that was definitely negative. Test for thrombocyte count tomorrow, and talk appointment in a couple weeks.

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Eltrombopag & menstruation 1 year 7 months ago #68917

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Hey Carcamoc, so yesterday I only went to get my blood tested. I told the assistant about my missing periods and she called the doctor. He said to her something like I can't give her her period back. I interpret that as he never heard this and left since we didn't have a talk appointment that day and it's not that urgent.
I did find a few posts in this forum though where Momto3boys also mentions having problems with her period on Promacta. And also bone pain. I wonder if it's the same I have (my spine sometimes feels like it's breaking apart and all my joints keep cracking like I'd imagine the sound for a cartoon skeleton or something, really a lot)... Anyway, I'll comment on her post, maybe she sees it and can say something about it. That makes three of us already. With the menstruation I mean. :)

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Eltrombopag & menstruation 1 year 7 months ago #68919

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Are you happy with the reply from your doctor ?
Not sure I would be. Also not sure I would interpret the reply as you did.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Eltrombopag & menstruation 1 year 7 months ago #68920

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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How unprofessional of your doctor. If mine behaved like that I'd be changing to another one and telling the practice manager why.
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Eltrombopag & menstruation 1 year 7 months ago #68922

  • Carcamoc10
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ImPatient that was definitely a very weird response...it came off very rude, personally. I have noticed sometimes doctors are so convinced our symptoms have nothing to do with anything and they kind of dismiss us at times. I definitely get that it’s not urgent at the moment, but at the very least he can make a note of it and look into it later if it continues. I myself am contemplating postponing my follow up in early May because I’m not comfortable venturing out just yet. Especially since I’ve had nothing but stability lately, it just seems unnecessary at the moment. Hopefully you’re doing alright, take care of yourself!
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Eltrombopag & menstruation 1 year 7 months ago #68928

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Carcamoc
Over here my consults are by telephone at the moment. I went to GP surgery for blood draw however. I went yesterday, very stringent Covid 19 precautions in place.
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Eltrombopag & menstruation 1 year 7 months ago #68931

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Hi Carcamoc, MrsB & MelA- I do find the answer a bit rude, but I wasn't on the phone, so I can't be sure the assistant repeated this in the exact way it has been said. I'll see how it goes next time, because when I saw him face to face in the past he seemed nice. I already switched hematologists a couple months ago. If ITP is really all I have and my blood counts stay relatively stable I won't need to go there as much anyway, but of course at the moment I still have questions...
Regarding the Corona virus, yes I currently don't use public transport. When I'm in the waiting room there's usually just one or two other people or nobody at all, sanitizers everywhere, masks and so on... it seems pretty safe.

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Eltrombopag & menstruation 1 year 7 months ago #68934

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You have to be comfortable with your doctor ImPatient - I have "fired" a PCP for implying something was "in my head", when one insisted prescribing a med known to have caused bad consequences, calling me by the wrong name - I refuse to put up with stuff like that!! (I knew a lady who didn't change doctors when she was told her pain was "all in your head" - turns out it was in her head, she died of a brain aneurysm).

Why not check with your OB/GYN - chances are it is just the medication, but can't hurt to ask.

I'm staying away from doctor's offices if at all possible - have a phone consult on Wednesday and am happy to do that. I can also have video conferences with any of my doctors, can also email them, can send them photos via email - and this started well before this horrible virus.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Eltrombopag & menstruation 1 year 7 months ago #68935

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MelA- Yikes, I do know the "in your head" comments from doctors too well. Thankfully, with not as bad consequences as the woman with the aneurysm, that's so sad!
My last hematologist laughed when I said I wanted painkillers if I had to have a bmb and tried to push me into doubling the dose of NPlate even though I had trouble breathing, chest pain, could barely sit straight and a count over 160, 170 something like that. I'll clarify what happened with the current hema next time, perhaps it was a misunderstanding, like the assistant maybe said I don't have my period- without context- and he understandably wondered what he has to do with it. I am pretty sure it's caused by Eltrombopag, but I'll go to my gynecologist too, just in case.
Here actually schools and shops are starting to open again tomorrow, so I don't know how high the risk of infections still is in my area.

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Eltrombopag & menstruation 1 year 1 month ago #70082

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3rd day not taking Eltrombopag (1 day 25, 1 nothing) and I'm really bleeding for the first time. Had a few drops in between but not like this. So my opinion is still I didn't bleed because I took 25mg daily, because my periods stopped abruptly with it and came back right when I lowered the dose. Doctor still thinks it doesn't matter. But if anybody else is ever looking for this... this is my experience... To be further observed.
Also my joint cracking isn't as bad anymore. Waiting to see my counts, hopefully I don't have to increase again.

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