Experiences with

Interferon alfa-2a

Hi everybody, I'm Ciaran & I have been very recently diagnosed Polycythaemia Vera. As you're probably aware, the early stages of research are quite daunting &, whilst my haematologist is recommending Hydroxycarbamide or Peginterferon alfa 2a to rapidly reduce my platelet count & get my high stats under

For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three years later this has ballooned to 60.3kg, despite my efforts to control any

In some recent threads this has come up in context of the PEG shortage and there is some confusion. For those interested here are some thoughts on MPN interferon versions. -- There are a many different types of IFNs, with various Greek letters and type classes. For MPNs only two among these many

Following a diagnosis of mild Sjorens my consultant is recommending another jak2 allele burden test ( yes in uk you can now ask for another one rather than be left guessing) and a potential break from Peg. My concern is that if heamocrit numbers start rising again, it takes so long for Peg to 'work'

I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. There is no sign of recurrence of the brain tumor. In fact, it seems I have a rather healthy brain for someone age 69. There is less cortical ischemia than many my age have and no signs that would indicate a risk of developing

I am about to start week 9 of Pegasys Interferon. The first week went as suspected with flu like symptoms, then every week after the side effects got less and less, until week 7. Week 7 had me vomiting for hours after the injection, but subsided on its own. Week 8 continued to have me nauseated but no

I have ET (+ bone marrow fibrosis). I changed from Anagrelide then back to Hydroxycarbomide (which I don't get on with at all so they just tried it again) to eventually Pegasys Interferon Dec 2023. My platelets were very erratic but at my last blood test were finally down to just over 500 middle

No bone marrow biopsy, started on HU immediately. Would I be considered too old to start an interferon drug?

I have ET with JAK2 mutation. With the shortage of Pegylated Interferon my Haematologist stopped giving me any medication except for Clopidogrel. My last injection was 15 October, 2024. I administered this two weeks after I would normally have it, i.e. 4 weeks, so this was at 6 weeks. I did this

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I only have one concern. When I was taking interferon to control my blood levels I started getting nosebleeds. The last one resulted in me having to attend A&E as it would not stop. I am worried that the same will happen when

Hi all, good morning and wish you all a wonderful holiday. I had a conversation with a friend about the difference in efficacy between old and new interferons. He claimed that the efficacy of older IFNs is only about half of Besremi, based on what the manufacturer Pharmaessential claimed in this

I am taking hydroxyurea for my pv. From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of myelofibrosis other than having regular bone marrow biopsies, which would be extremely expensive. For some people it seems the symptoms of myelofibrosis

Another one I almost missed... CD138 is expressed in advanced and aggressive prostate cancers, playing a role in tumor progression and interactions with the microenvironment. Its expression is higher in metastatic disease, making it a potential biomarker for aggressiveness. QXL138AM is a masked immuno-cytokine

Thanks to everyone who responded to my previous post on Progression. Since then I have had my BMB and the worst has been confirmed. Not only have I progressed to Post PV-MF, 1+ to 2+ in some places, but I am in accelerated blast phase at 10%. I have had irradiated blood transfusion last week as my hbg

Given the global shortage of Pegylated Interferon till July 2025, I, like others, have been asked to increase my dosage but decrease the frequency of my injections. I was previously administering 45mcg a fortnight and was told to increase this to 90mcg every three weeks. Personally I’m happy with this

Hi all the amazing people on this forum :) I am 41, have ET that has progressed to PV as well now. I was on aspirin alone for about 12 years, then when my platelets hit 1100 my hematologist advised to start additional treatments. I tried Pegasys first, which to my greatest disappointment I didn't tolerate

I was recently discharged from an NHS Opthamology department (satisfyingly my peripheral vision has improved). I mentioned that I am still bothered by quite blurry vision some days - the Consultant said this is due to dry eyes (pre-dated Interferon treatment, but obvs one to keep an eye on, no pun intended

The results are in from my labs on 12-02-2024. Overall, it is good news. JAK2 VAF is stable at 10%. This is the same as last year. History JAK2 VAF - 12/23=10%, 12/22=9%, 05/21=38%, 10/20=29%, 9/20=26%, 03/19=25% This is my take on this. While I would like to see the JAK2 VAF continue to decline

Hi and tks to all in advance for replying to my mess I just wanted to know what people's opinion is on this I'm off my interferon since Oct due to shortage so all I am on is 150mg of aisprin and I have been doing fine since thankfully I had an appointment with my hemo nurse a week ago and bloods

Hi all, Just a little further info… apparently I’ve found the symptoms I explained a relief can be a cause of Pancreatitis from taking interferon, therefore has anyone found this to be a factor? Apparently it’s rare but can happen…