Changing meds :(

Hi I've got et and jake 2 posted

. I've been on hydroxycarbamide for 3 yrs which worked wonders in bringing my platelets down fro 1800 to around 600. They have started to rise again and they want to change my meds. I've been lucky and had very few side effects from hydrea but am worried now. Please anyone advise me on pros and cons of alternative meds. Thankyou sue x

12 Replies

  • Good luck. I'm only on asprin so don't know a lot about other drugs. I've heard of interferon and one called anaglide that work. Hope someone helps you with advice.

  • Hi Sue - I've never been on HU but am on Pegasys and it is brilliant, so don't worry there are other good drugs. I just inject once every 3 weeks now and it's keeping my platelets around the 330 mark, down from 1150 before. No significant side effects apart from a bit of dry skin and slight mouth ulcers for a couple of days at a time - easy to deal with those. Hope it all works out well for you and let me know if you want any more info...

  • I have been on interferon alpha for 15 years. For a few weeks at the start when I took it I had flu like symptoms but that soon went. Added bonus is no colds since I have been on interferon. Wouldn't be on anything else. PS it has always kept the platelets under control

  • Thankyou for all your replies. I can go in on Tuesday a little more confident. I don't think I can take interferon as already suffer from depression but will look into pegasys ta x

  • Hi, I'm in a similar position, I have ET, JAK2 neg, I've been on HU for nearly 3 years too. It was working fine, but my counts have been climbing the last few months, from being steady around 350 for a while they are now heading towards 600. Instead of attending clinic every 10 weeks I am back to every 4 weeks, and a review next time if they are still going up, so I'm very interested in what happens to you!!

    Best Wishes

    Lizzie X

  • I shall keep you posted! X



  • Just before Christmas I was changed from HU to Anagrelide as the HU was lowering my red Blood (HG) to much as I also have a form of Anemia, so far nor really had any side effects and on the whole feel much better not so tired as my HG is staying at a good level.

    Caz x

  • hello Sue,

    I have been on hdroxy carbamide for 20 years and it has controlled my bloods very well. Originally I was on about 16 X 500 mg tablets a week but now down to 12 a week. In the first 10 years or so the dose was varied slightly according to my blood results.

    However I think the haematologists don,t like to go much above 21 x 500 mg tablets a week as it can cause skin damage and leg ulcers. It can also be abit rough on the tummy.

    I would seriously ask why going the want you to go away from HC /HU and is this decision based on one result.

    AS an engineer I work on the maxim of if it broke don't fix it , a slight change in dose might be all that's required. Doctors do love to follow fashion

    all the best

    Town Crier

  • Thanks for your comment. I'm on 34 hydroxycarbamide a week and it's been slowly creeping up over the last 6 months. I'm an NHS nurse so will make sure their change of meds isn't based on cost , as think I've earned it! X

  • that is almost certainly why they might want to move on from HC. I dont think it will be a cost saver, HC is very cheap its one of the oldest synthesised drugs going back to 1890s.

  • I was on HU for about a month before changing to Pegasus. I think it is important to recognize that you can solicit feedback from people, but you will not know how your body will react t o the med until you actually try it.

    For me, HU was not a fit. The fatigue was overwhelming. But, inf worked better. Yes, maintains proper hydration was hard at first, but that improved. Overwhelming fatigue hits me from time to time, but I'm getting better at that. Overall I'm feelin better than before treatment.

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