I know some of us live with low platelets and no meds. My question is what range are your platelets, how often do you get a CBC, and are the frequency of your CBC tests your decision or your Dr.'s recommendation?
I've been in the low range (3-10) for months and was getting CBC's weekly or multiple times a week. It is exhausting and time consuming and I've started only getting a CBC every other week by my own decision. My doctor only intervenes with a medicine (IVIG, Rituxan, etc) if I am having bad symptoms (bleeding or petechiae). Since I tell him when I am experiencing those symptoms I don't feel the need to check the numbers so frequently.
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bellumbus
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When mine were low I was only tested every 6 months. I had no symptoms really except for a few bruises. The lowest was 37. Now they are 157 last test, and I did not use meds.
Ah, I feel your pain bellumbus. It is exhausting. I have not had them that low for very long but i do try to get off that testing treadmill when i can. Are you in uk? It seems to have got sensible here....that is go much more by symptoms than numbers....but i think under 10 is more tricky . I started Romiplostin ...(nplate) a year ago, reluctantly as i hate meds. But its been brilliant. My platelets were 11 a year ago and are now 128. No side effects. Not one. I have to inject weekly at home which is not ideal though fine but its 15 mins and only CBC every 6 weeks now (tho at the beginning it was a weekly trip to test plus learn how to inject)
No, in the U.S. and yes that does sounds refreshingly sensible. Most doctors are obsessed with the numbers here. I just had a consult with a different doctor and he suggested nplate, so I appreciate hearing about your experience with it. Thank you.
I too inject nplate - I have 4-6 week blood tests still which is a pain but they can’t quite get the injecting schedule right, it was every 2 weeks and they were too high so it went to every 3 weeks and then they went too low so they decided on once a week with a lower dose which didn’t work so I’m now back to every 3 weeks - as a drug nplate is fine once you get use to it and injecting yourself….
Thanks for the info. I read your posts, so Fostamatinib worked for you, but they decided it was too expensive and took you off it!?! Did you have any side effects with it?
My doctor is recommending I try Fostamatinib, and if it doesn't help then try nplate.
Hi - yes I was on the trial for fostamatinib - I was on it for 5 years and then taken off it abruptly which I was not happy with. The trial ended and I was told I could continue on it still but I think it was being used in a covid trial too so I had to stop taking it. It took a while to work and the side effects were gastric but I stuck with it as I could not face trying to find another drug that worked for me - I learned to live with the gastric side effects and what made things worse - I wish I was still on it - 2 pills a day and my platelets were always stable at around 80-100. My platelets are all over the place with nplate and I’m constantly having blood tests etc. I’m not sure where your based but in the UK it’s still not licensed fostamatinib so I can’t go back on it and it’s also very expensive and as the trial has ended it’s unlikely I will be back on it anytime soon! Interesting though that you are being offered it….maybe it will become available in the Uk then !
When my platelets were below 10 I was told to go to the hospital. Was in the hospital for 3 weeks tested every day. First started on steroids which did not work. I was then given IVIg which brought my platelets to 110. I was discharged and had a blood test 3 days later. My platelets were back at 7. Back in hospital on Ivig, Platelets came back to 80 released again and blood test in 3 days. Platelets back to 3. Back in the hospital on Ivig and started Promacta. Platelets back to 130 and released. Stayed on Promacta and platelets went to 250. I had labs every week for 2 months and weened off Promacta. Now off med completely for 3 months and platelets are stable at 250 to 320. I went from weekly blood tests to once a month now every 3 months.
sounds similar to my story. i never tried promacta but that's because i also have issues with my red and white cells and promacta only helps with the platelets.
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