Having seen my haem on Thurs and explaing some of the symptoms/side effects I have recently been experiencing (long bone pain, ‘fizzy’ hot feet, mouth ulcers, thin breaking hair & nails, mega bruising, etc etc) he has now suggested I start Peg Interferon after a heart scan. I’ve been on Hydroxy for approx 15 years, I guess, and this sort of downside has only just become more prevalent.
Could anyone let me have their experience of their transition please? Just so I know what I can expect. Apparently flu like symptoms after the injection for a day or so (mine are to be fortnightly self administered injections) and I think he said the usual fatigue.
As an aside, does anyone use one of those Revitive foot/leg massagers (see above) with good results please? Tia. Poll x
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Polly-PV
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I also was intolerant of and refractory to HU. I have done much better on the interferons. They have been easier to tolerate and more effective. Side effects have been minimal and easy to manage. In addition, my variant allele frequency has reduced from 38% to 10%. I am very please with my response to the IFNs.
Hunter, I have a question regarding allele burden. I see people talk about it being reduced, but how is it measured? I have not even had a bone marrow biopsy, so I know nothing about mine. I thought the only way to measure allele burden was bone marrow biopsy. I'm pretty sure you can answer this question for me?
My father used his revitive everyday and swears by it!He had a large strike effecting his left side (arm very little movement) As walking for him is slow and difficult it was away to keep the blood flowing and reduce swelling .He's been a user for 3 years.Expensive but worth it
I did the transition. (Besremi) Normally you slowly decrease the HU and slowly increase the IFN. There are specific guides for the transition with Bes, and posts here have discussed it for PEG.
A safest approach is to use the lowest IFN dose that keeps your counts controlled. I had a strange effect for the 1st few days, extreme light sensitivity.
Hi Polly, I went from HU to Pegasys a couple of years ago without any problems. The first twi administrations of Pegasys gave me flu-like symptoms, but then less and soon nothing at all. HU will be gradually decreased and the Peg dosage may be modified, with close haematological monitoring until you settle down on the Pegasys and there may be the odd phlebotomy if necessary until the Peg does its work. Hope it all goes smoothly for you.
Hi, I can only speak for Peg which I started in December 2023. My platelets normalised in a couple of months and now injecting fortnightly. No concerning side effects and very pleased I chose Peg instead of Hydroxy. I was given a choice which I know many don’t have this option. Good luck 🤞
Hello, my experience with HU was terminated about 1 1/2 years into my diagnosis of ET. I tried an experimental med for another year or more and had lots of side effects including mouth sores, stomach bleed. Meant to say that I also bloomed in skin cancers with HU. Now I take an interferon, Besremi. I give myself an injection every two weeks. My side effects are more minimal, no flu like symptoms and it was not too bad learning to do it. My blood panels look better than ever as well. So, I am glad I tried it. Our bodies are unique and we process meds uniquely. But I’m glad I switched to an interferon. Good luck
I was diagnosed with ET about 16 yrs ago. And was on Hydrea for about 13-14 yrs. I’m a 69 yr old male.
The side effects from Hydrea were physically draining me and then my ET morphed into PV with intense bouts of chronic pruritis. My hematologist suggested we try to Peg interferon to better improve my blood counts and reduce the itching episodes. I have happily tolerated the interferon very well and it has gotten my blood numbers closer to where they needed to be and my itching is greatly improved.
I was on hydroxycarbomide for about 5 years, 3x500mg daily,plus venesections. Migrated over to Interferon, a hybrid transition, then pure Interferon, started on 135 weekly, now 135 every 10 days, all OK.
No side effects, that I can recall.
My allele burden was always fairly low, now I'm allele burden negative.
Interferon took some time to make a difference, I usually take mine just before going to bed, so no real issues.
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