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Single digits & more afraid of meds than bleeding??

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1 year 2 months ago #73404 by ImPatient
I was at my hematologist's today. Wasn't really an appointment, she agreed to test me QUICKLY because I have bruises all over my legs- front back everywhere, not possible to be caused by my usual klutziness. Well turns out my thrombocytes are ok- 113. I don't know how we got to this, but she said she has patients who have a thrombocyte count in the single digits and don't want to be medicated. I asked really, aren't they afraid of bleeding into their brains or something? That can happen right? Or is it unlikely? She said yes it can happen, and those patients were more afraid of ITP meds than of bleeding into their brain... ??? Why would that be? Are there any side effects I don't know about? She didn't have time today so I left after I got my test, maybe somebody here can fill me in...

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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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1 year 2 months ago - 1 year 2 months ago #73406 by mrsb04
All medications can have side effects. How each person is affected is individual to them. Loads of websites with the information on. In the UK one is given a patient information leaflet showing possible side effects. 
I can fully understand people not taking meds that give them side effects.
I will not take these again as side effects for me are worse than having a low platelet count,  Azathioprine, MMF, Eltrombopag, Fostamatinib and Romiplostim.

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1 year 2 months ago #73410 by MelA
medlineplus.gov/druginformation.html

That is a good site to check on a drug (supplement or herb) 
Heck yes there are side effects to meds for ITP.  Your count of 113k is quite good - I wouldn't be worrying about a thing with a count like that!  You were smart though to get a count done if you were concerned about bruises that you couldn't explain - I used to remember every time I bumped myself so I'd know if it was ITP or me - I don't do that any more, if I get a bruise I get a bruise/bruised.  

Actually I never worried about a brain bleed - know 2 who had a bleed with normal platelet count & no ITP, 1 had irregular blood vessels on brain and the other fell and hit head on kitchen floor, not counting my friend who had a brain aneurysm.

Regarding my friend who hit head on tile floor and had a brain bleed and never ever had low platelets/ITP:   I fell and hit the left side of my head on a stone/concrete planter January 2018, lower than normal platelet count and I did not have a brain bleed but did need 4 staples in my head.  I don't think they would have done a CT had I not told them I had ITP.

Anyway - go to the site, it is a good one.

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

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1 year 2 months ago - 1 year 2 months ago #73425 by Daryl
Based on what I've read, the brain-bleed risk is very low. Less than 1% according to this paper, and more common in children [ www.ncbi.nlm.nih.gov/pmc/articles/PMC10313438/ ]

Your doctor probably explained this, but even though your platelet count is reduced, the platelets that you do have are younger, larger, stickier. They actually work better - it's the body's way of compensating. The human body is amazing like that.

That said, if you ever find yourself with a sudden and very severe headache, a CT scan is a good idea.
The following user(s) said Thank You: Rob16, mrsb04

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  • MariLinTx
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  • Ret. RN/attorney, wife/mom/grandma ,Dx. 2/1/22. Fear has worn off as Doptelet is working. Now just trying to be an active family member and deal with,ITP, CAD, labile BP, CKD, back pain & mobility issues; neuropathy; migraines, and more. : (
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1 year 2 months ago #73427 by MariLinTx
Retired RN here. While all medications have side effects, obviously some worse than others, the last thing I’d want to chance is a brain bleed when it could likely be avoided. That said, if people have stable low counts they may live indefinitely without problems; the people likely to have issues are the ones who counts drop suddenly and they are unaware. I’d chance the side effects rather than a brain bleed. I did as do most others on this site who are taking meds to prevent a devastating medical event. 

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