Correct information?

Morning everyone

I have et and my hu was increased to 1000 mg daily due to increased platelet count but my wbc was taking a nose dive so it's been decreased to 100mg and 500 mg alternate days which was my original dose and I go back in 4 weeks . As far as I can recall , if you catch a cold you should stop taking hu untill your well again , does anyone know if this is correct ? I'm also wondering if many of you have to keep juggling doses of hu because of the effects on wbc while trying to lower platelets . I've been on hu for 18 months and it seems to be taking a long time to control platelets to a " normal " level .thanks everyone .

5 Replies

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  • hi i don't think it's correct to stop HU for a cold: only if u r on some specific antibiotics for infection.

    I had similar problem to you for several years: juggling HU dose to try and get platelets and WBCS in balance

    good luck

  • I have been on Hydroxycarbamide for 11 years. I have E.T.Jak neg Calr positive.

    My meds are adjusted often as my platelets do go up and down and of course so do my other blood cells. I have been on between twelve 500mg tablets a week and seven 500mg tablets over the course of the years.

    I don't think there is a normal level for patients with E.T. As long as my platelets are kept within a reasonable range I seem to be okay. This is why I am checked every 3 months or so and the meds tweaked if necessary. Having said that, I have been on eight tablets a week for several months as my blood levels seem stable at the moment.

    As to stopping taking your meds if you have a cold, I would not advise that. I was told never to just suddenly stop. Do tell your consultant or consultant's nurse that you have had a cold as that probably will have affected your blood readings.

    I wish well.

    Judith

  • Thank you for your replies

    My blood readings were taken 2 weeks prior to this cold so they wouldn't be affected by it that's why I'm unsure about the advice which was given to me by my heamotologist as it seems to differ from most other people's view . Although my platelets have dropped they very rarely get below the 500 and hover between 500 and 575 ... My heamotologist likes them to be 400 or so as she says she likes to air on the side of cautious but when I did see the consultant ( quite a while back ) they were 550 and he said he was happy with that , So confusing! ... I'm 61 and jak 2 positive

  • Hello jk1234, I have checked with the medical team for you and the advice is: it is not the case that you stop your medication, you should seek advice from your medical team if you have a fever over 38 if on drug and that’s it…

    Hope you feel better soon. Maz

  • Thank you Maz , that's reassuring to have the right information , I'm very grateful

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