follow up appointment

[Maxpenny]

I have been on hydroxycarbamide for six weeks and had a follow up appointment today. My platelet count was 456 but now up to 476. My medication was one 500mg mon to fri. This has now been increased to 1 every day I suppose I was too optimistic, the good thing is so far have felt reasonably well.

[heathermc]

You'll probably find doses may vary amd change over time . I started on.1 a day and my platelets were 1759 . It changes depending on blood test and other factors. I'm currently on.one every other day and take anagralide 4 a day . My platelets vary from 320 to 450 now .Your doing the right thing asking questions..and seeking advice . Goodluck with your treatment.

[Maxpenny in reply to heathermc]

Thanks

[Fairydust1111 in reply to Maxpenny]

Hi there

I have been on hydroxycarbimide for 9 months now and my platelets came down gradually from 888 to 399 but at my last visit they were 475 but was told that that’s okay as platelets can fluctuate with any aches or pains. I do notice that my joints especially elbows ache since starting Hydroxy but have been told aches are probably arthritis starting. I am on 500mg daily and they are keeping me on same. Best of luck 🤞

[Maxpenny in reply to Fairydust1111]

Thanks so much for info it is all really helpful. It is after you leave an appointment you you rember what you should have asked if you haven’t written it down! I appreciate all the replies it really does help.😀

[dogsandhorses]

When I took it every day, it took awhile to bring my platelets down from 900 to the high 400's, and it took awhile for the side effects to catch up with me...like a year or more. Side effects kept getting worse over 2 more years. Then I had to reduce the dose to one every other day. Still side effects, so now I am taking it every 3rd day, plus an 80 mg. aspirin. My last blood work showed my platelets in the 500's, but I would rather that than the side effects. Everything is a choice.

[Maxpenny in reply to dogsandhorses]

Thanks for your reply it all helps in the understanding😀

[Conneryfan]

Hi. Platelet counts can vary anyway, but my dose of hydroxy changed a few times until I reached the dose I am on which seems to keep me at healthy levels. So glad you are not getting any side effects.

[Maxpenny in reply to Conneryfan]

Thanks for taking time to comment it really helps😀

[Plate]

I am glad to hear you are doing ok Maxpenny. I have been on HU since 4/23. My only complaint is even though I am on 500mg every other day (QOD) now, I still have days when my body feels exhausted. I have been letting my body rest if it is tired. Normally, I am very active and do walk a lot. Those days make up for the down days. I have 4 horses that I have to care and 5 outdoor dogs. My place is 16 acres and 9 of it is beautiful forest. I think distractions are my best medicine!

[Maxpenny in reply to Plate]

Thanks yes I try to make sure I still keep my daily walks going with my dog but only do what my body is happy with! Don’t think I could take care of the one horse we had anymore but maybe more to do with my age than anything else!😂🐶

[hunter5582]

The variance from 456 to 476 is not significant. It is normal for platelets levels to vary based on what is going on in the body. PLTs can increase by as much as 100K in a single day. It is the trend over time that matters. Note that there is no linear relationship in risk of thrombosis and mild increases like you note.

All the best moving forward.

[Maxpenny in reply to hunter5582]

Thanks for info it all helps to understand the process and settle the mind😀