Hi, I'm a 32yo ET patient from Germany and found this group a couple of days ago. I was diagnosed five years ago with 1,9 mil platelets which are controlled by anagrelide (2mg) quite well since then. As some research points to superiority of Interferon in terms of disease progression I've tried Pegintron (90mcg) right after diagnosis and tried it another time (this time Roferon-A 3x3) last week. Unfortunately interferon seems to affect my hearing and my ears started to ring a couple of days after the first dose and I discontinued the therapy because I was afraid of persistent hearing loss or tinnitus. I'm willing to give it another shot next year when Ropeginterferon is available and this time under close monitoring of an ear specialist, hence I'm very interested if others have any experience with Interferon and hearing issues!
On a side note:
1) The research of Holmström et al. regarding immunotherapy for MPNs looks very promising! Since I haven't found any mentions in this forum, some links for those interested:
2) I have founded a friends' association in cooperation with the MPN Research Foundation a couple of years ago, which is recognized as charitable by the German tax authority and therefore allows every EU citizen to make tax-deductible donations to the MPN RF. I always intended to promote it, but I currently only use it for donations of family members. In case there is interest, I can give more information to potential donors.
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adiummy
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hello and welcome to our forum, glad you have found us, sorry to hear you are having problems with your hearing, I hope it gets sorted out soon. I am sure that some of the lovely people on this forum who are taking or have taken interferon will be able to give you some advice. Best wishes, Maz
Thanks, I think it will be reversible like the last time...I mostly discontinued Interferon because I was afraid of further degradation. I would also be interested if there are patients who have hearing issues with higher platelet counts. As switching medications rapidly increases my platelet counts, my hearing issues could also be related to platelets and not interferon...
Hi, that’s interesting. I’m on pegasys 17months. Before being diagnosed with a HCT of 0.68 I had ear issues. My PLT’s were within range. Since my HCT was lowered, with venesections, I’ve had no further ear issues.
I’ve been on Pegasys for 2.5 years now and do get mild tinnitus - I’m conscious of it but it’s not problematic enough for it to cause me any real concern.
I don’t know if it’s linked to the interferon or just age-related (I’ll be 62 in June) but will watch out in case it gets any worse.
I haven’t seen tinnitus listed as a common side effect of Pegasys but it’s probably on the list somewhere, as everything else seems to be..!
Thanks for replying. There are even a few studies regarding Interferon and ototoxicity, but the picture is very blurry. Interferon seems to increase hearing thresholds for a lot of patients. Some say it‘s reversible, others say it is not... but it seems very uncommon that it has an immediate effect like in my case...
I can't remember how long I've had tinnitus. I was diagnosed with PV in 1999 and know that the tinnitus has been around for a long time. It was there on Hydroxy, on Ruxolitinib and now on Pegasys. Sometimes worse and sometimes less. I don't think about it unless it gets very loud and really grabs my attention which isn't often.
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