How quickly do platelets decrease

[CMD53]

My platelets were 700. I started taking 500 mg Hydroxy Daily 2weeks ago. Blood test next Friday. Telephone Consultation 11th September.

Should I expect a fall in platelets or is it too early for any decrease?

[Andyls]

My platelets decreased a small amount the first two weeks. But, I am very sensitive/reactive to Hydroxy. After about six months, my dose was changed from 500 mg daily to 500 mg 4 times per week. This has kept all my counts in the normal range. There are others who do not react as strongly and have much higher (3 x 500 mg daily, for example) doses. So, I suspect that if you don't see any decrease, they will increase the dose. This medication seems to need frequent recalibration.

[CMD53 in reply to Andyls]

Thank you for your answer. I am learning that we are all different.

Thanks again for your time.

[Dovme]

Hi

I think people react differently. I was on 500mg daily now on 1000mg a day. Had a blood count just over a week ago after 6 weeks on HU dropped by only a 200. Now around 920

[CMD53 in reply to Dovme]

Thanks for your reply. My platelets were 700 on starting so I wait with fingers crossed that they have dropped.

Thanks for your time.

[Eadaoin]

I was told that people react differently. Mine started to reduce slowly and it seemed ages until the platelets started to reduce then suddenly we were off !!!and all was well.

[CMD53 in reply to Eadaoin]

Thank you for taking the time to reply. Your answer prepares me to not expect too much of a reduction at my next blood test. Slowly but surely is obviously the way to go. Thanks

[JojoWonder]

It took 10 months for my numbers to fall from almost 1200 to 500 with Hydroxy and Pegasys. A year in total to get to normal range and now just taking Pegasys Interferon.

You’re right in saying that we’re all different some people are much speedier. I’m just happy I got there!

Best wishes.

[CMD53 in reply to JojoWonder]

Thank you for sharing your experience with me.. I will await my next blood test results cautiously and not be over optimistic.

Thank you for your time

[Orangemusic]

I started with hydroxy from Jan this year. Initially my platelets did not reduce much. But in the latest report my platelets have come down to 450 from 700. I guess it will take few months to settle.

[CMD53 in reply to Orangemusic]

Thank you for your reply. I have learnt from all the responses not to expect too much to start with. I will be a patient patient.

Thank you for your time.

[Lifam]

Everyone reacts to it differently, mine have been within normal range since second month I started on Hydrea. Remember my haematologist told me in the past that it normally takes about few weeks to work.

I also believe a good anti-inflammatory diet, keep hydrated and active so to keep our cholesterol and weight down, I was told it will definitely help.

[CMD53 in reply to Lifam]

Thanks for your reply.

I am drinking about 3 lites of water a day.

I have a Personal Trainer twice a week - Zoom

I join 2 Zoom exercise classes for 30 min sessions

I watch my weight & my diet.

I control everything I can influence.

I hope my platelets respond accordingly.

I feel very well & 🤞Everything’s moving in the right direction.

Thanks for sharing your experience.

[shiftzz]

My platelets were 1143 on starting took 3 months to get down, hydroxy I was on 17 pills a week, now down to 3 plus inteferon, aspirin .. Good luck..

[CMD53]

Thanks for your reply. I am now being pragmatic in my expectations. I now realise it will take time.

Thanks for your time.

[Wyebird]

Mine didn’t fall when I started on 500gm it was increased to 1,000 then after a week I started to feel a little better. A blood test confirmed they had dropped. 500 gm could be the correct dose for you. We are all different. You are always started on the lowest dose first.

Good luck

[CMD53]

Thanks for sharing your experience.

I feel so much better than I did. I am being cautiously optimistic.

I will know the results on 11th September 🤞

Thanks for your time

[hunter5582]

Everyone reacts differently, so it is hard to say. Do bear in mind that at levels like 700, there is usually no change in your risks by having your platelet levels drop to some arbitrary lower point. Risk calculation is more complex than that. It is more important to pay attention to your symptoms than to sanitizing numbers on a lab. However, we are all different, some people do have symptoms at relatively low platelet levels. Others tolerate levels in the 1 million range with few symptoms using nothing more than aspirin. I do hope you find that you have a reduction in symptoms and actual risks that you are trying to control.

Here are a couple of resources that explain it far better than I can.

legeforeningen.no/contentas...

youtube.com/watch?v=hbVr9u3...(Not working as expected?)

All the best to you on your MPN Journey.

[CMD53]

Thank you for your very detailed response. I watched the YouTube video with great interest. It is very thought provoking. I will have to watch it a couple of times to fully understand & to be able to compose questions for my Consultant on 11th.

I am Jak2 positive.

I must admit that I thought I was asymptomatic Apart from getting breathless. However, after 10 days of taking Hydroxycarbamide I felt so much more energetic, I also believe my breathing has improved.

Thank you so much for sharing.

[krotsida]

I was on 500mg daily now I take 3 a week plus aspirin. Platelets are 350 steadily.

I wish you all the best. .

Anastasia.

[CMD53 in reply to krotsida]

Thanks for your reply. I am so pleased for you that your platelets are now reduced. I am keeping my fingers crossed that mine also reduce. .

[Pevans1052]

My experience is that Hydroxy acts very quickly, but follow ups every few weeks is important to achieve optimal numbers and correct dosage. I started at 500 mg daily and my platelets dropped from 900 to 600 in 3 weeks. Dosage increased to 1000mg per day and platelets dropped 600 to 400 in 3 more weeks. No side effects as of yet. All blood counts are normal. working perfectly so far!

[CMD53]

Thank you for your encouraging reply.

I am having my blood test this morning. I have been taking it for 20 days.

I await with interest my consultation next Friday.

So far I have had no side effects.

Thanks for your time.

[Mollymag2]

I was diagnosed in may at over 800, given 500 hydroxy. First month dropped to 622, dose increased to 1000 which dropped them to 322. See doc next week and am interested to see if they remain in normal range. No reaction to hydroxy and continue to feel well . A blessing for sure. The only complaint I have is cyclical severe itching which I've had prior to diagnosis. I do believe this was caused by undiagnosed ET. Doc did extra labs this time to try to find cause. Be a strong and persistent advocate for yourself is my best advice. Best to you.

[CMD53]

Thanks for your reply.

Sorry about your itching. I also had itching & allergic rashes.

So far I have had no side effects. I have been taking the Hydroxyurea since 16 th August - 19 days. Had my bloods taken yesterday & get the results next Friday.

Thanks for taking the time to share your experience.

All the best.