HYdroxy

[Garden987]

THank you all for your replies to my post. It's just worrying that my platelets rose from 537 to 587. I was taking two 500 mg daily yet now the dose has been increased to 6 per day which I find worrying. I will try to take your comments on board and try not to worry. Again, thank you for your support. All good wishes . Mary

[mhos61]

Platelets rise and fall somewhat with every reading. Yours have only slightly risen by 50 you say, (537 to 587). I wouldn’t be too concerned, although it would be better under 450.

I would be more concerned that your hydroxy has been increased from two a day to six a day for this relatively small platelet increase?

You said you were told this in a telephone conversation. I wonder if you have misheard part of the conversation. Do you have a Clinical Nurse Specialist who you could get some clarification with?

[piggie50]

Mary, please don’t take 6 capsules per day until you’ve had it confirmed that this is the correct dose.

[amhann]

Hi Mary - I agree with your other replies - an increase from 2 tablets to 6 is a huge jump! Please grab a phone and get that checked. x

[LuckyPaul]

Holding off on taking any meds for a few hours is not the end of the world. You need to speak to your consultant for clarification ASAP. 3,000mg (reading that right) is a massive amount to be bumped to. My platelets are anywhere from 650 to 1,100 and I've never been on a dose like that. (Note the range...platelet counts can fluctuate and mine have been quite a bit - it's only recently that they have started to remain a more consistent value at c.700)

[Tico]

Hi mary,I like others here think you need to double check your dose with CNS. I seem to remember you have got confused several times before about you medication and dosage. Maybe you should speak to your GP if you think you are having problems concerning the taking of your medication,better to err on the side of caution.tina🤗

[stillkicking]

Dear Mary,

Please don't take 6 a day, but continue with your two until you have spoken to your GP. As others have said, 6 is a huge dose, and seems far too much for someone with your platelet numbers.

Do let us know how you get on.

Peter xx

[Searcher56]

If my platelets were as low as that I would be overjoyed. Are you really taking 6 tablets a day or was that a typo. My platelets hover around 700 and the haemo dept as Guys is not too concerned especially when everything else is quite normal. I am on 9-10 tablets a week plus aspirin. I monitor my own intake by watching out for symptoms like headaches and visual disturbances of which I have none presently.

[Wyebird]

My platelets kept fighting the hydroxicarbomide. Increase the dose and the platelets went up. Once I hit 17 a week. After 3 years Anagrelide was introduced. BINGO-Now I’m slowly reducing my hydroxicarbomide.

Please phone and request a consultataion with your nurse just to clarify.

It seems a huge jump.

[Tico in reply to Wyebird]

Hi wyebird, I believe your body gets used to the hydroxy when fighting to keep the platelets under control. I struggled for 11 years with huge variations with my platelets,jumping in the hundreds and sudden drops and nothing seemed to stablise them over the years. Now suddenly my last 3 platelets counts have been as follows:483,183,141, monthly check-ups. Still told to maintain my dose of 3,6days a week and 4 on the 7th day.I was told because of high risk of thrombosis and my platelets being unpredictable. Not due to see haemo until begining of october as now will be seen every 3 months if my platelets remain around that mark. Atb,tina.🤗

[Wyebird in reply to Tico]

I do hope you stabilise and that maybe you will soon drop your dose - even a little. My platelets never fluctuated they just steadily rose. Maybe that’s why I’m now on anagrelide also

[Wyebird]

Oophs just reread my post. Not very good English sorry. It should have explained that when 17 hydroxicarbomide didn’t work anagrelide was introduced. That was after being on hydroxi for 3 years

[Mazcd Partner MPNVoice]

Hello Mary, I agree with the replies from the other members who have replied to you, I think you need to check with your consultant or specialist nurse or GP, as 6 tablets per day does seem rather a large dose. Maz

[Lifam]

Hi Mary, I also agree with all the other members replies, my platelets was 627 first and only been taking 500mg once daily, and last month platelets down to 475, still taking same dosage. PLEASE double check your dosage with your specialist.

[hunter5582]

We are all here to support each other. Glad to hear the comments helped. Please see the other comments and check out these dosing instructions. That sounds like too much HU, particularly for an increase in platelets that is not medically significant. I would also urge you to see a hematologist who specializes in MPNs. I found one on this list mpnforum.com/list-hem./ .

[Meatloaf9]

The long term trend in your platelet counts are more important than one little jump of about 50k platelets. That little of a change could even be due to hydration. Drink plenty of water all the time. My platelets were 550 one year ago and then this year they were 459. I do not yet take any medications for my disease per the advice of my mpn specialist. Best of luck to you. I am ET JAK2+.

[Mazcd Partner MPNVoice]

Hi Mary

I and many others on this forum have been so concerned about the increase in your Hydroxycarbamide to 6 tablets a day, so I asked Prof Harrison about this, she has said:

It’s a huge increase and above the usual maximum she should check

I am putting this reply on all of your posts where you have mentioned your dose increase and where people have been advising you. Maz

[Mazcd Partner MPNVoice in reply to Mazcd]

Mary has checked with her haematologist and there was a mistake, she now has the correct dose to take which is a lot less, she will let everyone know of this herself when she feels better. Maz