Consistently increasing platelets (over 750) but on my hospital visit this week they have dramatically reduced to 52. My hydrea prescription has been gradually increased over past year to try keep levels down ie hydrea 5 x2 & 2×3 and daily asprin. Second set of blood tests carried out in the evening before i headed home to double check if It was just a blip. Received a phone call to confirm results are true result.
I was instructed to stop taking all ET meds with immediate effect and return to the hospital on Monday morning for more bloods.
Also, if any bleeding etc occurs before monday i've to go to the nearest a&e unit available to me.
Any thoughts please or indeed any reassurance would be greatly appreciated ☘️
Any thoughts.
Written by
Woodlandgarden
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That level of thrombocytopenia is a significant concern. It sounds like your hydrea dose was too high. The only thing I could suggest is to follow orders and discontinue the hydrea and aspirin. Your platelet levels will return to a safe levels. Until then, please be very careful and avoid any injuries that could prove quite serious. Your providers can best advise whether you need additional treatment to boost your platelet levels in the short-term.
it would be a very good idea to review your treatment plan with a MPN Specialist. For many people with ET, there is not a need to treat the thrombocytosis aggressively. Suggest you review your treatment goals (platelet target) with a doctor who has extensive experience with MPNs. Here is a list just in case you have not seen it. mpnforum.com/tsr-the-list/
Please let us know how you get on. Until then, all the best.
I had a similar but not as drastic a response when I first began HU. My platelets were then around 1300. I responded quickly and they stopped into the 100 range. My red count dropped greatly too and I was weak and lethargic.
I was given a holiday from HU then slowly started back to find ideal dosage I now maintain on 500mg three days a week and 81mg aspirin daily.
I had a similar reaction after 10 days on Hydroxyurea ( in NZ ) for PV . My platelets fell to 7 and I was admitted to hospital requiring a platelet infusion. No more Hydroxyurea for me! Platelets have taken 6 months to recover -- now 160. Good luck .
Wishing you all the very best at this worrying time. As Hunter said, you really need to see an experienced MPN specialist, be extremely careful to avoid injury, even minor knocks and cease all meds. Take it easy and let othered rush around you for a bit. (Thrombocytopenia is also a well known side effect of covid injections- if you’ve had any? If yes might be something to consider discussing with your doctor) Hopefully your platelets will pick up again swiftly.
Also as Hunter rightly said , many with ET don’t need to aggressively treat high platelets. Mine have typically been around 1400 since dx 9 yrs ago. I just take ½ an aspirin every 3rd day , which I checked with an MPN specialist and she thought that was fine for me. I’m creeping up to 60 now but have no plans to change anything.
All the best . Hope you get this resolved swiftly.
Hi all, platelets back up to 80. I'm back on asprin but still off hydrea.Back with Day Ward on Monday next for bloods & meds review. Some talk of a Bone Marrow Biopsy, ( over 5 years since my last BMB).
Still taking things very easy, stamina low. My daughters are home for Christmas and taking care of everything & great care of me ☺️
Thank you so much for all your good wishes & advice.
Best wishes to you all for the Festive Season & for a very Happy Christmas
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