Change Hydroxycarbomide to Pegasys?

Hi all. I'm 70 and had ET from 2003 until 2014 when I progressed to PV. I was then put on hydroxycarbomide 500 my per day. It has brought my countsdown to pretty well normal. I feel very tired, itchy etc but my main problem is breathlessness which is really affecting my life. I have had lung and heart tests and no reason for breathlessness was found. Therefore I guess it's being caused by the PV or the hydroxycarbomide. I was wondering if I changed to Pegasys would that stop the breathlessness. Has anybody got any advice before I see my consultant on Wednesday?

10 Replies

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  • Hi Anita - I've never been on HU so I can't compare it but I'm 60 and I've been on Peg for ET for 18 months with no significant side effects - certainly no issues with breathing.

    Good luck..!

    Andy

  • Hello Anita. I have pv and took hydroxy for over 12 years. When I experienced breathlessness it was due to capacity of red cells to carry oxygen. Perhaps your next blood text will give the answer. I hope so. Not understanding these symptoms can be stressful.

    Cheri

  • Thanks Cheri.I too thought it was the red cells not containing enough oxygen because some of them aren't formed right. My consultant couldn't see an answer to that. A Jack 2 inhibitor could perhaps solve it but Ruxolitinib is not licensed in the UK for PV.

    Anita

  • Hello Again Anita,

    I was on the Ruxolitinib trial for a couple of years. It didn't really take away fatigue, I don't think. With me it lowered by reds dramatically. I don't think it does that to everyone. Perhaps it will soon be licensed here. I am in the UK, too, Gloucestershire.

    I don't know if there is an answer to our fatigue. It isn't easy to understand if you haven't experienced it. Perhaps yours will improve a bit over time. Keep asking.

  • I have been on the Majic trial for four years. It's Ruxolitinib versus the best alternative therapy, hydroxycarbomide in my case. That's why I don't think my consultant will want to change me to Pegasys because my cbc is near perfect. I can cope with fatigue ok it's the breathlessness I want rid of.

    Thanks. Anita.

  • Is Pegasus available under the NHS?

  • Yes. It's interferon.

    Anita

  • Hi Anita, I am seriously considering Pegasy. There is a new form of it that was in phase 3 in the US so I was hoping it would be available in the next year or so. Pegasy can be rough at the start but they say go slow at it but most do very well on it. Some Doctors shy away from at our age but my local and the expert I see are for it they just said you have to be prepared for it, you might have no side effects and you might have many. It does rev up your immune system so if you have any other immune disease hiding it will bring it out, like Lupus etc. Let me know what your consultant says?. Best wishes! Mickey

  • Thanks Mike I'll let you know. I'm a bit frightened to ask him cos I'm sure he'll say no.

    Regards Anita.

  • I had breathlessness which was different to my asthma before being treated but it went away with treatment.

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