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Interferon Treatment

Posted , 10 users are following.

keith28441
keith28441

Hello Guys

I was wondering if anyone out there is being treated for their PRV with interferon injections? I was originally told by my Haematologist that I would have to go on to Hydroxycarbamide but the hospital review panel that reviewed my case is saying that I need to go on Interferon because of my age. I am still a “baby” at 53 years of age….well humour me at least…LOL – As I am not 60 years or older they feel that the first line of treatment should be interferon and they want to start me on it soonest as I am apparently at high risk of stroke, pulmonary embolism or heart attack. I should point out I am not overweight, never smoked but do have primary PRV and suffered multiple pulmonary embolisms in 2008. My only concern with going on interferon is that the side effects aren’t pleasant. The Haematologist said I would have to inject myself 3 times a week……..REALLY???....3 times a week? Hydroxycarbamide I think I could tolerate better but the Haematologist and review panel believe that as there is a small risk of transformation to AML if I am put on this too early, interferon is the best option. I am fully aware of the risks where Hydroxycarbamide is concerned, but transformation to AML is small around 3%-5% I believe, and feel it’s a risk I would rather take especially if interferon is going to impact on my quality of life. I have managed my condition so far just with venesections and Clopidogrel but am told this is no longer enough.

Any advice/feedback greatly appreciated.

Many thanks

Keith

0 likes, 34 replies

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  • jocelyn18777
    jocelyn18777 keith28441

    Posted

    Keith hi I am taking interferon pegasys injections and have been for the past 5 years.

    Firstly the injection I have is like an epi pen- no syringe needed so it is very simple to inject and secondly I have had no side effects- although like you I was initially concerned at the outset.

    I was diagnosed with PRV in 2009 aged 43, started on venesections, moved to hydroxy carbamide and then onto interferon suggestion of my consultant. I inject myself once every two weeks.

    Interferon is a lot more expensive that hydroxycarbamide - not sure if it is available on the NHS. I am covered by my medical insurance but not sure for how long. Hope that helps. Feel free to ping me with more questions.

    • keith28441
      keith28441 jocelyn18777

      Posted

      Hello Jocelyn

      I went on Hydroxycarbamide in December and I am taking the drug along with Anagrelide. So far so good, I don’t have any side effects. I was offered a choice between that and nonpegylated interferon, which required me to inject myself 3 times a week as opposed to the pegylated one, which only requires a weekly injection.  The NHS only offered me nonpegylated, their budget didn’t stretch to the pegylated.

      Thanks for your response, much appreciated and glad to hear that you are getting on OK with the interferon.

      Kind regards

      Keith

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