AB results. Less than 1% allele burden. Yay!

[Looolooo]

Hi all

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.

[hunter5582]

Outstanding! Your self-advocacy has certainly paid off.

[Solyesh]

great to hear and good for you for advocating!

[PupsBestFriends]

Glad to hear your great news! You are so right about the enormous value in these forums for information and support.

[EPguy]

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.

[Looolooo]

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?

[EPguy in reply to Looolooo]

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.

[Luthorville]

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?

[Looolooo in reply to Luthorville]

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).

[Luthorville in reply to Looolooo]

Pretty effective at a modest dose. That’s great!

[RazB]

great news and thank you for sharing. You’re right, there’s a lot to be found here, and lurk away, we all do it! X

[Roxanne22]

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

[Looolooo in reply to Roxanne22]

Keep going. I'm just outside winchester. You?

[Roxanne22 in reply to Looolooo]

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

[Looolooo in reply to Roxanne22]

So glad you decided on an inteferon..might take a bit longer for you as youve started high, but anything that reduces AB and possibility of disease progression has got to worth a go, right? I'm 56 in a few weeks. I thought, before diagnosis, that symptoms were menopause... I wondered if you did too?

[Roxanne22 in reply to Looolooo]

That is a very interesting question. I actually didn't as I was perhaps in perimenopause, but the menopause was a couple of years later - it was v hard to get a dr to take me seriously about my symptoms though, due to my age it was just ah this is just the menopause - it took about 7 GP appts and eventually I said that I felt I had either kidney cancer or an MPN, due to what I had been able to research myself - it was v frustrating - and indeed some of the symptoms are the same - like even now i wondered whether my night sweats were hormonal or the MPN....prob the latter as when I started the interferon the night sweats stopped (unless I treat myself to the odd glass of red wine, then the sweats return!) When I eventually was menopausal (aged 51 years) my night sweats were one of the main symptoms along with anxiety, I advised my older male specialist and he wouldn't hear of me taking HRT... after enduring around a year of 2 to 3 hours sleep a night due to the sweats, I called Claire Harrison and she said for goodness sake start the HRT - you deserve a quality of life, she is so lovely and pragmatic! anyway have kept the HRT at a v low dose to keep some oestrogen presence, which I feel helps my energy - when speaking with Claire at that time she was convinced that some women at that 'delicate life stage' do develop MPNs and other chronic conditions, all part of a perfect storm which together can somehow encourage the illness to present - obv with our condition being rare there won't be much research about this but hey ho. Thank you for your encouragement and I will keep plugging away, I am so thrilled to see my counts coming down, even though this is just part of the long term picture, it's a v pos start. This week I am going to creep the dose up a bit to 70mcg from my micro 50 mcg! see what happens, I am sure it will be fine. We started low as I have had several allergies to foods and meds over the years - so I was cautious to begin with. Lovely to meet you on here and I hope that you have a fab birthday and celebrate your recent good news in style Sarah xx

[Nature_for_Life in reply to Roxanne22]

Great news regarding your reduced AB Loolooloo I'm interested in both yours and Roxanne22 experiences. I'm now 48 and it took years for my diagnosis in the US due to 'hormonal changes' during motherhood in my mid-30s. After seeing a MPN specialist in the US, I was prescribed pegasys and have done very well with a reduction of AB to single digits. Now going through perimenopause I have new symptoms which are tricky to identify as a MPN or perimenopause. Definitely believe more information/research is needed for us women particularly when diagnosed younger. Thank you for sharing your stories. I'm now in the UK and it's helpful to learn from others experiences. I'm also nervous about the pegasys shortage. I have done extremely well on peg and hope to have many decades of life left to enjoy! Thank you again for sharing.

[Roxanne22 in reply to Nature_for_Life]

Hi there Nature_for_Life, I am so pleased that the peg has been working for you and to hear your positive approach towards modifying this curious disease that we live with! It's encouraging to hear of another person who has been helped with the AB% from Interferon - fingers and toes crossed for me!

Re the menopause, it does sounds as though these new symptoms are connected to this stage of life, especially as the disease is so well controlled. I would certainly advise seeing a menopause specialist privately if your finances allow, and also looking into bioidentical, as well as body identical hormones - I started on the former with great success as I was prescribed a far more comprehensive range of hormones, inc DHEA and testosterone along with the standard issue of progesterone and oestrogen, all tailored to my needs but regret I was unable to continue with this due to the cost of living etc meaning that the several hundred pounds a month extra were not readily available to me as a single person household, along with all of the other health protocols I follow.

I would also not worry too much if Peg is short in your area as many of us have had success in switching to Besremi in light of the production/supply issues and have found the drug to be at least equal in tolerance and results. Good luck with navigating your way, and keep persevering in the quest for your personal 'optimised' health, our health may no longer be 'perfect' but I sincerely believe we can all be at 'our best'! Sarah x

[Looolooo in reply to Roxanne22]

Yes, I agree there is so much symptom overlap between perimenopause/menopause. Thank God for my 'on it' GP. I'm sure there are many other women out there of a certain age who might benefit from jak2 testing as well as hormone measuring. I totally agree with others re seeing a menopause specialist even just once if you have PV. I paid £250 for a 40 minute appointment. I had been told that I shouldn't take HRT by my lovely, but YOUNG, female haematologist, but as the menopause symptoms became worse, I became desperate. Money well spent. I now receive HRT patches through the NHS, so that is free. Also, some of the sjorens symptoms (if interferon gives you that) ALSO overlap with perimenopause/menopause symptoms. So yes, more joined up thinking required for females of our age group generally I think🤔

[Roxanne22 in reply to Looolooo]

Hi LoooLooo - It certainly is! it seems to be the luck of the drawer doesn't it - at least we are pro active in managing our own health needs. Re your sjoren's did you feel that the interferon caused this? If so is there anything in particular that I should be watching out for? It's certainly a juggling act. I wish when I had been young pre all of this I had done a bit less wild partying, as I seem to have gone from stressed with a demanding work life, and more often than not 'worse for wear' (my job was v sociable) to menopausal/chronic illness - arrghh! In many ways, I generally feel much healthier these days, so that can only be a good thing - onwards and upwards as the saying goes!!

[Looolooo in reply to Roxanne22]

We are still healthy! The sjorens (only mild) was found as a result of another test carried out by my haem which I don't know much about - an 'ANA' test. She likes to request this test to keep an eye out for some nasty side effects of the inteferon. I have really dry eyes, slightly achy joints, and a dry mouth but nothing to write home about, could be expected at our age anyway, and nothing that extra turmeric, fish oil and upping the water intake doesn't resolve. So I am ignoring the sjoren diagnosis!

[Mieshie]

very good news! So glad to see how well IFN is working for you. Also good job speaking up. It’s only Feb—2025 is already a great year for you!

[Meatloaf9]

Excellent, very happy for you. Long may it continue. Best always

[RoundTheWorld]

Yay indeed for your reduced allele burden!

Just chipping in - I’m in a similar position in terms of PV + peri / meno making it hard/impossible to work out what causes which symptoms and having the same considerations re. HRT etc. Diagnosis delayed partly due to symptom overlap.