Sorry if this has already been asked, I have done a search on here, but there are so many posts to wade through; it became a little boggling!
I've just had a haematology appointment today and discussed several things, including my increase of very itchy skin (particularly on my back when showering). I was told this could be an indication for commencing further treatment (my platelet levels are in the low 600s and I am 45) and was suggested that pegylated interferon could be prescribed. I've asked to have some time to think about this as I don't know much about the medication and want to feel better informed before starting anything new. I am generally very fit and healthy and am worried about the possible side effects. What have others experience of taking this medication been, and has this impacted on how well you feel in a positive or negative way?
And where can I find the best information about pegylated interferon so I can make an informed decision?
I have a follow up appointment in 3 months time...
Many thanks, Lucy
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LRH77
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Am age 44 platelets count was 812 ,2 weeks ago started me om 90mg pegasys interferon alpha due to my paraesthesia in my hands and feet and headaches dizzy, slightly mild side effects like flu like symptoms tiredness on first shot but nothing major , has Friday gone went up see my haematologist did my bloods my Platelets are now down to 600 everything okays and am back up to haematologist in 2 weeks time if everything fine then, Then there will see me in a month time .
The paraesthesia in my feet hands did wear off for a few days end of last week,but this week there are coming back on with headaches wozy feeling ,but might just take a while longer to see if it's the right dose for me ,has am still quite new to having new treatment .Xx
My experience with PEGylated interferon has been very positive. It has been more effective and easier to tolerate than any other treatment option I have used. Note that we are all different in how we respond to these medications. In my case, treatment is for PV with both erythrocytosis and thrombocytosis. It tok about 8 weeks on 45mcg Pegasys to get the PLT to target
The only adverse effects have been some mild itching/rashes (not related to showering) and mild leukopenia. The itching is well controlled by Claritin. The benefits are well worth the risk in my case.
My personal experience of pegasys has been that it’s worth taking it.
Once it started working for me (it can take some time to see results) my blood counts were really well controlled & joint pain, itching etc eased significantly
I found it tough going but manageable for a couple of months while my body adjusted. For me the side effects were flu like for a few days after each weekly shot. Duration of feeling crappy got less over time & also moved to fortnightly shots, so I was only having 2 or 3 days a month where I felt a bit rough.
You’ll see from posts on here how much people’s reaction to pegasys varies - it really is a case of having to try it yourself and see how you feel. I’ve heard of some people feeling energised and really good after a dose, others really struggling, most people somewhere in the middle.
If you decide to start pegasys I’d recommend taking the shot at night before bed (you’ll sleep through worst of side effects) with a couple of paracetamol. Drink lots of water and choose a day of the week that you don’t have big commitments the next morning.
Disclaimer: I’m about to make some completely personal, anecdotal, not evidence based and possibly woo-woo statements next!
My mental health improved on pegasys - knowing I was taking the best possible treatment available to me brought peace of mind and allowed me to kinda park worrying about my ET.
I felt like my immune system was supercharged. While on Peg I had multiple very close exposures to covid and tested negative every time (even when pregnant). Didn’t get any of the usual seasonal colds etc either. Shortly after stopping Peg I was back to regular mere mortal status 😂 Picked up covid, coughs,colds etc.
None of the negative side effects of pegasys persisted after I stopped taking it, my platelets stayed within normal range for almost a year afterwards.
I too feel mentally better on Peg. I’m stable whereas on hydroxi and anagrelide I wasn’t. I’d hit really low mood every time my players went up and meds had to be increased.
I’ve been on Pegasys just over 7 years now and it’s brought my platelets under control easily, with no significant side effects. I do get some itching though, so that might be worth thinking about. It’s not bad and I can control it with over the counter creams and occasional antihistamines.
I’m just on a maintenance dose of 45mcg every 4 weeks now. I was approaching 60 with platelets over 1,100 when I started it.
Given your age and fairly low platelet count and assuming you have no other risk factors I wonder if you need to start treatment yet or could stay on watch and wait? If the only symptom is the bad itching could you try other treatments for that first?
Yes, that's what I was wondering, it does feel a little like a sledgehammer to a nut type scenario! Of course in the moment when I'm offered something like that, these questions don't instantly come up, it's only after the appointment. I'll get in touch with the nurse specialist and ask, I'm going to buy some antihistamines today and see if that helps my intensely itchy back!
Dr Silver doesn’t seem to agree with the watch and wait approach:
« We believe in the early treatment of polycythemia vera and myelofibrosis.If you regard these as neoplastic diseases, which they are, we feel “watch and wait” for early stage disease as akin to telling a woman with a lump in her breast to wait until it’s in her bones ».
gosh that’s a really low dose of Peg considering how high your platelets went. Thrilled for you. I’m on 90 a fortnight soon to try every 17 days. I do hope it continues for you
Thanks - it took me a few years to get there but one injection a month is hardly like being on meds at all - it’s been a great solution for me. Hope you manage to extend your interval too!
In this one minute video clip Dr. Hasselbalch, a world authority on using interferon for ET, PV and early MF, explains why the earlier the drug is started, the better the chances that low, easily tolerated doses will be effective in normalizing blood counts, and in some cases, induce a durable, potentially lifelong, state of Minimal Residual Disease. youtu.be/TIlzFKLtj0k
I am on peg and very grateful to be so. Started on 45mcg and increased to 65 after a few weeks. Virtually no side effects. Figures coming down nicely although was slow to act for me as it is for some so you may need to be patient. Peg held figures steady for a while before kicking in although that coincided with me realising that the bottom of my fridge was too cold. Invested in decent fridge thermometers and now kept at exactly 5 degrees on middle shelf. Any questions please ask. We are all here to help
My overall experience of peg wasn't great, it's not for everyone. I wish it was. You have plenty of time to go through the literature and decide. I find when the itching gets really bad Fexofenadine really helps.
I was diagnosed with ET 30 years ago at age 37 and only recently learned I have JAK2. I never had any symptoms. I accepted that I had to do something because of my age so I started Peg 5 weeks ago, 45 weekly. I had a blood draw yesterday and was very surprised that my platelets came down from 580 to 340, now in the normal range. I have had no side effects either. So far so good for me.
yes Lucy I am on peg interferon & still adjusting doses. I was on weekly 45 injections but bad headaches so moved to monthly & no problem apart from shivering flu symptoms the day after . Julia Devon UK
to treat or not treat is the million dollar question, different experts have different views, Silver , Hasselbalch etc are pro early intervention, others not. If you decide to medicate Peg/Bes may be best of the current drugs, some tolerate it fine, some not. It can make itching worse for a minority and for a few it made itch a lot worse, eg me, I have heard others say it improved itch , sometimes taking a while. If you decide not to medicate there are options for itch , many have been mentioned here, I used low dose photography UVB for 10 years, worked well for me despite being a Olympian itcher, I hear Beta Alanine works well for some.
On Peg and glad to be - taking 90mcg every 17/18 days - it has taken a while to get to what we hope is the "right dose" platelets are slowly coming down (from 900's to upper 500's/600's) but WBCs came in to line immediately - very few, if any, side effects - hoping for long-term response/disease progression modification (at least slowing any potential progression if not full remission)
I was diagnosed with PV when I was 44. My hematologist (at Stanford University in California) treated me with phlebotomies and aspirin. I felt very good throughout this process. Life continued as normal — job, activities, exercise, etc. I always had the annoying itching for about 25 min after showers and some fatigue due to slight anemia due to the phlebotomies, but that was it.
My Dr. always told me I’d have to go on hydroxyurea at age 60, but he never talked about Pegasys or disease progression or any of that. Fast forward to age 60, early in 2022. A new bone marrow biopsy (the first one since diagnosis in 2007) shows notable disease progression. It’s still not MF, but it’s too close for my comfort. Thankfully, I was able to get on Besremi, and I’m hoping it has time to work before the PV becomes MF. I’ve read that Pegasys, like Besremi, has the potential to slow or stop disease progression.
For me, during all that time I was feeling great, my bone marrow was chugging along and becoming gradually more fibrotic. Maybe my Dr believed that if he could get me to 60 feeling good, that was a good long life. I beg to differ!
Now I’m on Besremi, which is quite manageable. If I knew then what I know now, I would have gotten on an interferon as soon as I could have, even if I had to live with some minor side effects.
Good for you for doing your homework before making a decision! Good luck to you.
Thanks so much for your response and for telling me about your journey. It really does feel like it'd be worth trying, especially if it can slow or halt disease progression. I've never had a BMB, I tested JAK2 positive when I was first diagnosed in 2012, so I guess the haematologists didn't see the need. I don't think it's routinely done in the UK, especially if diagnosis is clear with a blood test.
I'm certainly feeling a lot better informed hearing other's experiences, I may ask for a consultation sooner than 3 months to get the ball rolling.
I was on Peg for two years then came off as bloods etc were all in normal range. I am still in range after 14 months. Also side efffects were minimal and because the platelets were in normal range the itching was less . We are all different but it worked for me . Good luck with what ever you decide
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