After some time on Pegasys Inteferon, my haematologist agreed to retest my allele burden. When diagnosed it was 14%, now less than 1%. (Blood, not BMB)Yay! Meeting to discuss soon. It's only with thanks to this forum that I learned about and pushed for Pegasys Interferon near the beginning of my PV journey. Because I was below 60 years of age I was considered low risk and offered aspirin and venesections only, the side effects of which were not too nice. The haematologist referred me to this forum. For rare diseases the value of these international forums seem huge to me. I just hope all are referred post diagnosis. You are all so helpful and supportive and I learn so much. Lurking is just as useful as posting as well. I lurk every morning to see how you are all getting on.
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Looolooo
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Have you been tested for any other mutations? If no other mutations and less than 1% you might qualify for a dose reduction or pause. Has your Dr discussed that?
How is your Sjogren's? Last posts you had strong indicators of the condition. I assume it's been stable if you're still ok on the IFN. That is good and a sign that is it possible to take IFN with Sjo, although still risky as on the label.
Hi epguy. 'If' sjorens then doc thinks its mild with some symtoms caused by other things I. E dry cough was a ramapril side effect so has now stopped. So that's good. Meeting to discuss way forwards is in April. I reckon doc will either suggest a break from interferon or reduce dose even further. How's you?
That is good indeed that the dryness is "merely" med induced, all to common with many meds.
What is your current IFN dose?
I'm actually in an other-than-horrible set. I've had three of these since the overnight Sjo two years ago, hoping I can get more than a couple weeks like this. I think the Rux is helping, its Jak1 target is relevant to some autoimmune conditions. If you want to reduce your AI risk, maybe asking about the Rux/IFN combo, if you still need any MPN meds at all. The combo allows reduced IFN dose and presumably A-I risk while the Rux may be protective.
Congrats, that's absolutely fantastic news!!! How long have you been on the Peg/Besremi drugs? I'm wondering how long it took you to go from 14 to 1. That's really a phenomenal outcome. How often have you needed to get phlebotomies?
I think about 2.5 years perhaps a little longer. I can't recall exactly. But took about 9 months to work. I had read up on this so stuck with it. I recall some phlebotomies at this time but none since. I was last on 90mcg every 2 weeks down from 90mcg each week but just started besremi 100mcg once a month (only taken once to date).
That's amazing news thank you for sharing your positive news, I am hopeful that my AB will reduce also, it's too early to test yet but the actual counts are coming down nicely 3m only into my journey with BES. You must be feeling top of the world now Looolooo, and so good that you chose the path you knew was right for you. May I ask where you live as I am in UK and like you relatively young when diagnosed, 49 yrs, but Interferons were only avail if you were unable to tolerate other drugs such as hydroxy. This is altering now thankfully. Wishing you continued good health xx
Oh wow, I am near York! I was 7 years with vene and aspirin only as all that was offered to me initially was hydroxy - so decided to go down the natural route, although I managed to do very well keeping symptoms at bay and the acceleration at bay, what I hadn't realised was the AB% was (I assume) creeping up, or had been high all along - I asked several times for a BMB but was declined due to cost and also well what difference would it make as you would still have the same treatment avenues - eventually I managed to get the BMB and when I found out that the AB% was 77 it was a no brainer to go onto the interferon and with the Peg shortage was put onto Bes, after two months of behind the scenes negotiations to allow us to have the Bes, I just hope it can continue as seems to be treating the elevated counts more, my WBC and PLT have come down v well with only such a small dose (50 mcg per 2 wks) - my platelets are now 590 and were as high as 1700 and my WBC 12 (was around 16) so feeling really pos that the drug is suiting me and doing what it does best Great to have someone in UK a similar age, I am now 56. All best wishes to you xx
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