Hydroxycarbamide newbie

Hi, I have just started hydroxycarbamide 3 days ago and really appreciated reading some of your experiences. I have Jak2 positive etc etc & after 3 yrs of monitoring & venesections, I had a bone marrow biopsy which also revealed smouldering myeloma. My platelets have hit over 850 & although initially I was deemed low risk, my iron levels have dropped too low for venesections. When did you start noticing side effects ?

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  • I started about 9 weeks ago for PV - firstly on 1000mg a day and then put up at the beginning of April to 1000mg one day and 1500mg the next and I have definitely noticed a difference since the dosage has increased. More tired, mouth ulcers and blisters on fingers - don't let this worry you as I know I am on a high dosage. I think I started noticing tiredness about 2 weeks into treatment - I also know a lot of people do not experience side effects.

    I am still adjusting my life to deal with the condition and as I have to lie down a lot - in the garden if the sun is shining - everyone I meet says how well I am looking. Which is nice to hear but I'm sure some people think I am just being lazy and not really ill at all...

    I am having a blood test on Monday to see if I can start to reduce the dosage - fingers crossed. I hope everything goes well with you and you get comfort (as I have) from this new found group of friends!

    Rosemary

  • Thank you. Hope it gets better for you. I am only on 500mg a day, hope it is enough to keep things under control. I'm having review in 2 weeks. On the positive side, as consultant insisted I wear sun block to protect my skin, I treated myself to an Estée Lauder daydream 😍, might as well make the most of it.

  • Please be careful about lying in the sun. Make sure your skin is protected with a high SPF sun cream or safer still, stay in the shade! I have taken HU for many years and always had stern warnings from haematologists about sun exposure. Better safe than sorry. Hope your next test is good and you can reduce the dose. Best wishes, Jan

  • Thank you. Haematologist was very insistrnt on need to wear sun block, used it as a justification to buy an Estee Lauder daycream with factor 50. Every cloud. ..

  • i am not sure - happened so gradually - over years not months - just had less energy. good luck

  • Hello. I was on hydroxy carbamide for around 12 or 13 years and it served me very well. My lifestyle was normal and I was able to begin a new career at a later point in my life. I think when we MPNs are first diagnosed it is often a huge shock for a variety of reasons. The disorder takes over our thoughts. I've learned that it doesn't need to take over our lives. I trust Hydroxy will look after you as well as it did me. Every good wish.

  • Hello... I also take Hu and have been for about 10 years. I take 2 a day. Whilst expecting no end of side effects (and I remember being very anxious) I have actually never had any and my life continued as usual. Good luck.

  • I've been diagnosed with ET and am Jak2+ and been on Hydroxy (1 a day and now 10 a week) and aspirin since February this year but haven't really experienced significant side-effects except burning feet and a rushing noise in my head (which I put down to the aspirin). Life is normal otherwise. My biggest problem is remembering to take my medication as I have no pain to remind me.

  • I have been on 500mg for six weeks now, at first every other day but for the last week and for the foreseeable future one every day. The only side effects so far are a few bouts of vertigo and very dry skin on my arms, and hot feet. I think as I've said before we tend to blame the medication for all our problems, but mostly it's the condition. I have myelodysplasia, JAK2 positive. My overwhelming fatigue has improved since I had a transfusion of two units of blood. I have no idea how long that will last. Good luck with the Hydroxy - we are all different!

  • Hi everyone, it has been so helpful to read about other people's experiences. So after 4 weeks on hydroxy, I have had 2 checks and platelets have dropped from 820 to 609 after 2 weeks and to 492 after 4, which is very encouraging and by far the lowest it had been in years. White cells normal, haematocrit still hovering between 0.46 & 0.48 but most importantly I've been feeling fine. If anything feeling less tired than before. I know that eventually consultant will want to try Interferon instead of Hydroxy but at the moment, all goid9

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