Hello, I haven’t posted in over 2 years but have been following the posts and great advice and support given.
I was diagnosed with PV in Dec 2020 aged 41. I was on HU for afew months but decided to come off it and just do aspirin and venesection. That worked for last 2 years but platelets over 1000 and WBC starting to creep up. My haematologist wants me to start interferon next month after next visit. I’m anxious about starting it and the side effects but have read positive reviews about blood results on it.
Has anyone any advice or what to expect when starting interferon?
Thanks in advance 😊
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Deevie1
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It sounds like starting on interferon, likely Pegasys, is a good idea. Being a bit worried is natural, but have confidence in this choice.
I have been very pleased with my response to the interferons. Pegasys/Besremi have been more effective and easier to tolerate than anything else I have done to treat PV. My only regret is that I waited as long as I did to start on the interferons. My quality of life is better now than before I started on the IFNs.
My experience is that it is better to start low and build up to the effective dose, being patient along the way. The IFNs are not fast acting. This should be treated as a marathon, not a sprint. I actually responded rather quic\kly, dropping PLT by 300K in about 8 weeks at 45mcg/week of PEG.
It is a good idea to do your first injection under observation in case of a very rare reaction. Thi can be done at a self-injection training session, usually with a nurse. The injections are really easy and you can barely feel them.
great post Hunter! I ve been on hydroxicarbamide for 15 years and am thinking about changing. My only dither is that HU suits me really well and I feel well.
Downside - skin incredibly dry and looks like an 80 year olds! However I feel this is a small price to pay.
I too am worried about interferon side effects. Louise 😊
There is no one right treatment for all people with MPNs. We each have our own treatment goals, risk tolerance, and individual reactions to medications. If HU suits you then it is a viable choice for you.
We know that one of the differences is that the interferons appear to be disease-altering in reducing allele burden. If you believe that something like a reduction in allele burden is a worthwhile treatment goal. then it would be reasonable to consider changing your medication. It would also be worth considering a change if you find the adverse effects of HU become too bothersome or if the risks of long term use are too worrisome. Perhaps you would react better o PEG, but there is no guarantee.
It is a judgement call that has to be made based on your treatment preferences.
I second Hunter's comments. I wish I'd started sooner on Pegasys. It brought my blood numbers in line pretty quickly and my fear of injecting myself was completely unwarranted. My MPN specialist started me on 90 MCG and I handled that well. They did phlebs to pull down the HCT but the interferon has been a bit of a miracle at bringing down my WBC and platelets to normal. He put me on 135 after two or so months and my body didn't like that as much and I'm back on 90 now. Listen to your body and do what you can to help the drug do it's thing (lots of hydration, eat healthily, exercise etc) and see it as a long game.
I hsve been on interferon for nearlyv6 years, I was on hydroxycarbamide and venesections. My consultant moved me away from hy and venesections, I'd had too many venesections.
My interferon dose started off at 45, then up to 90, progress was very slow, I was still having venesections and lower dosage hydroxycarbamide. My body took a good few years to get to whete I am now, so if you dont see quick results stay with it
My current dosage is 135, they tried reducing it, but it didn't work.
Hi , I started Interferon 8 weeks ago and like you I was very scared when told all the side effects , I had been feeling well and couldn’t imagine taking something that was going to make me feel depressed or sick , I started on 45 mcg and tolerated that really well so after 4 weeks started on 90 mcg and the only side effect has been itchy skin which everyone on this site has given me such good advice I’m sure I’ll get it under control . My platelets have reduced to 363 so I’m very pleased now I started Interferon . I always inject in the morning so I can stay hydrated all day and I’m to busy at work to think about it and I always get a good night sleep that evening too . Hope all works out well for you .
Hi to you both. I was thrilled with starting Pegasys because I hoped it would eliminate the need for phlebotomy which it did.
I think the reactions people get are their body’s getting use to the interferon mostly and in a few weeks months the reactions change or lighten as your blood comes back in line. The hope with this treatment is for your body to maintain healthy bloods while the medicine is given in smaller doses, further apart.
I have the itch still 18 months in and it is just annoying now. I interpret that to mean that the jak2 in hiding and the Pegasys is hunting it down. Feels like it has caught lots of them. My visual and hope anyways.
I do feel very normal in every way and it is just a matter of time for the both of you. 🦋
thank you for most positive post . I hope too that it all smooths out over time . I haven’t had itch all day so I enjoy each day I can with always a positive thought 🙂.
Hi Franko, sounds like you’re getting on well in interferon and blood results great. I’ll be ready for the itching as that was one of my first symptoms but only after a shower. Lots of tips here on how to deal with it. I hope you continue to do as well 😊
Hey I felt those exact same worries, I think it’s only natural to feel like that. My experience thus far is great, my bloods are almost within normal range now and I don’t have any side effects. Best of luck.
Great advice - would just echo the start low and take it slow approach. Can always move up if needed and tolerated - patience can be key as for some the interferons can be slow acting (but fairly steady) - has taken my platelets almost a year at a steady dose to come close to in range but they've gotten there and with minimal side effects (and with WBC also now in range).
Given your age and the potential of the interferons to slow or otherwise modify disease progression, it seems to me you’re making a very good decision. I was diagnosed at age 44 and hummed along feeling pretty darn good on phlebotomies and aspirin until age 60. Then the doctor did a bone marrow biopsy. Sure enough, the PV had been slowly and silently progressing all along.
My MPN specialist put me on Besremi a year ago and increased the dose by 50 mcg every two weeks until we got to 500 mcg. My allele burden has come down, the itching has subsided, the LDH is almost normal, blood counts are stabilizing, and I’m feeling good. But I worry every day that I waited too long to give interferon a chance to affect disease progression. Now it feels like a race between the long acting interferon and the slowly progressing disease.
I originally had some mild nausea, which went away with time. I also went through a period of melancholy (the mood-related side effect), but that went away over time, too. I have some mild rashes here are there, but no big deal. The actual shot administration is no big deal at all. Like someone else said, you won’t even feel it.
I’m sending you good wishes and fortune that you’ll tolerate the medication well. At your age, this could truly be a game changer for you. Keep us posted, and thanks for sharing!
Thankyou 🙏 I’m hoping it’s the right decision, seems to be the only one I have 2 small children and want to have the best quality of life for as long as possible. I was 41 when diagnosed, similar age it was such a shock but slowly dealing with it. This forum really helps 😊
My (age 65) experience with Besremi: I had six injections, rising up to 250 and then 300 mcg, upon which my doctor abruptly stopped the meds because my liver enzymes went up several times the max safe level. I've been off everything except aspirin and supplements for inflammation (plus liver detox Chinese herbs from my acupuncturist) for over two months. Gradually the liver enzymes sank, and now they are perfectly normal. Oddly, my HCT stayed in the good zone, even lowering some, during this time. My platelets rose way up, from 400 something to 600 to over 900. Most recent test they were happily down to 740 or so. I called the pharma essentials company to ask about financial aid and to check in about liver counts. They said liver counts can go up to 5 x normal on this drug, but upon such a rise, the dose should back track gradually until things get better. (Company rep had a strong accent and I had a some trouble getting this exactly.) My doctor is afraid of Besremi and has been super conservative, but I am surprised he did not check with the manufacturer for guidance. (I've asked to change to someone locally who might have more PV experience.) I may well go back on but refuse anything over 150 mcg to see if my platelets will come down at a lower dosage but longer duration. I'm wondering now whether the PV diagnosis was incorrect; did my drinking more fluids help the HCT count as much as the interferon did? I guess that will not be clear anytime soon. The doctors are not keen to change that diagnosis at this point of course. Best of luck to you as you find a good dose and await improvement!
No side effects if started on low doses . I am on monthly doses & plenty of energy, weight good skin good & hair . HU wrecked all of theses& took 6 months off it to recover & hair return to normal 👍
Hello Deevie1, I’ve been on interferon for 14 months. I’m almost 80 years old. It appears to be working well for me. I experienced a lot of itching but that has abated overtime and with the application of a lotion called Cetraben. Otherwise no apparent side effects. I also take 1 pill of 75mg aspirin daily.
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