Did anyone's platelets continue to rise when they first started taking Hydroxycarbamide?

[Reflex4]

My better half only started taking Hydroxycarbamide three weeks ago, he is only on 500g per day, the first week his platelets had dropped by around 50 when he had only taken three tablets, last week they had only dropped by 13! But this week they have gone right back you to almost his starting count! His Haematologist has doubled his dosage and wants to see him next week.

Did anyone have the same thing happen when starting treatment?

[corrins]

Yes I was the same. Started on 500 but they were not coming down as fast as they would like so kept increasing my dose. Now on 1000 a day and platelets are steady every visit. Hope this helps. X

[Reflex4 in reply to corrins]

Thank you Corrins for your reply, it means a lot.

Our concern is that the platelet count has gone back up - Would have felt better if it had stayed the same! We knew they would up his dose this week if it still wasn't coming down faster this week, but we just never expected it to have gone up. The haematologist said we were back where we started from!

[Hidden]

I was started on 1000 a day and within 3 weeks my platelets had dropped dramatically so my dose was reduced to 500, within a couple of weeks then went right back up again, along with every symptom of ET. We had to play around with the dose and now my platelets have stabilised give or take a platelet or two on 12 capsules a week. Don't worry your better half will find their magic number too.

[Reflex4 in reply to Hidden]

Thank you Mallard, that is so reassuring.

[beetle]

Yes, platelets seem to have a will of their own and do exactly as they please! It takes a while to get the dose right and for some it stabilises there for years. Some, like me, have been juggling the dose for years! I was once told that treatment with HU is like cooking with gas - you can turn it up and down to get the results you want! I frankly ignore small rises and falls - up to about 50 or so - and call that stable. It is the overall trend you have to watch more than individual results as platelets can spike for other reasons - infection and even stress, in some people. It is good to keep your own record of the numbers so you are aware of the trends but try not to get too hung up on them. (I know it's hard not to when stating a new medication) Hope that helps.

[Reflex4 in reply to beetle]

Thank you beetle for taking the time to reply, it means a lot. All three of you have given me some peace of mind - Thank you.

[Reggieroo]

Hi Reflex4

I have been taking Hydroxy for six years. Initially I took one per day and it immediately lowered my levels. However it didn’t last and my platelets rose again quite quickly. Over the first couple of years I was told to increase the dosage regularly as each check up showed an increase. I’m now on two a day every day and that has been pretty stable for two years. I had my annual check up yesterday with the consultant and there was no significant change from two months ago when I had a platelet reading.

I feel good and the meds don’t seem to have any significant side effects. Fingers crossed that continues. I’m 63 and still very active. I took up cycling when I was diagnosed at 58 and I’ve just returned from cycling 2000kms across several European countries. So counting my blessings that I’m still able to do what I want.

Reggieroo