PRV and intreferon

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I have been on hydroxy carbamide (urea) for over six month and the itching it getting worse. I saw my regular consultant last week and he mentioned interferon. I said I would look it up on the net and we could discuss it when we next meet. I have done that. Are any others on interferon? I have lots of questions including; I assume it is administered by an auto injection thingy? Does it hurt? How often? If you were on Hydroxy carbamide, does interferon suit you better? I have looked on YouTube and there are a number of bits about self injecions - it seems straightforward, is it bearing in mind I hate needles?

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  • Posted

    Sadly, itching is a symptom of PV although not everyone suffers from it.  Hydroxycarbamide can be useful in combatting this symptom but again, it doesn't suit everyone..  If you could look back over previous contributions on this forum there has been some discussion about interferon and I seem to recall that it has its problems as do many other drugs.  I have never used this drug so am not really competent to advise on its use.  However, I am sure that other contributors will be in touch to advise you of its merits.   Best wishes.

  • Posted

    Jim27451

    I had extremely severe itching for over four years before being diagnosed with PV, during which time I was treated for Aquagenic Pruritis with partial success. On taking Hydroxyurea the symptoms slowly faded away. It could be that your itching is caused by the PV not the Hydroxycarbamide, as in my case. I am not trying to talk you out of trying Interferon but it may not be the panacea you seek.

    ItchyChris

  • Posted

    Hi Jim, I'm not on interferon, but I am considering it. It is called Pegylated interferon, which is different than interferon which treats Hep c patients. It's slow acting and you self inject once a week. The usual dosage to start is 45 mcg. It's not chemo, and after a few years can put you in hematological remission. There's no cure for us, but this can prevent progression to MF. If you'd like, look up lectures on utube by Dr. Richard Silver and Dr. Ruben Messa. Dr. Silver is a pioneer of treating Pv with interferon. I think you'll learn a lot to make your decision.

  • Posted

    Hi Jim,

    Here are some latest good news about the new generation interferon(P1101) for PV patient:

    3 clinical studies on Ropeginterferon alfa-2b for patients with Polycythemia Vera (PV) presented at EHA 2017.

    1. Abstract EHA-3520: An update from the PEGINVERA study (NCT: 2010-018768-18) on long-term maintenance treatment of up to 6 years (median of 4 years) with Ropeginterferon alfa-2b was provided. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeks’ long-term maintenance dosing schedule after a median of approximately 2 years.

    2 .Abstract EHA-3556: To alleviate the known burden of frequent health care office visits for product administration, home self-administration and patient individual dosing of Ropeginterferon alfa-2b were performed in the PEN-PV study (NCT: 2014-001356-31).

    3. Abstract EHA-1564: To assess the disease modifying capability of Ropeginterferon alfa-2b compared to hydroxyurea (HU), the effect of treatment on hematopoietic bone marrow progenitor cells was investigated in 10 patients of the French PROUD-PV study population (NCT01949805).

    In short, Ropeginterferon alfa-2b is a novel, long-acting, mono-pegylated proline interferon with improved pharmacokinetic properties offering improved tolerability and convenience. Patients were successfully switched from the once every 2 weeks to the more convenient once every 4 weeks’ long-term maintenance dosing schedule after a median of approximately 2 years. The majority of patients showed a sustained reduction of the mutant JAK2V617F allelic burden to below 10%, demonstrating the disease modifying capability of Ropeginterferon alfa-2b treatment.

    And you can view the latest med information about PV from the 59th ASH Annual Meeting & Exposition(December 9-12, 2017).

    Paper number 320:

    Ropeginterferon Alfa-2b Induces High Rates of Clinical, Hematological and Molecular Responses in Polycythemia Vera: Two-Year Results from the First Prospective Randomized Controlled Trial.

    Conclusions:These data confirm a) the high and durable hematologic response and symptom improvement achieved with Ropeg, b) the excellent safety and tolerability profile of Ropeg, and c) the disease modification capability of Ropeg suggested by its ability to significantly reduce the mutant JAK2 allelic burden. Ropeginterferon alfa-2b will provide a valuable and safe new long-term treatment option for PV patients.

    I think the new generation interferon may a good choice for a permanent cure !!

    Best wishes

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