Experiences with

Interferon

Hello, I am very grateful for this forum. By reading the many posts I have gained much better insight into the disease. I was diagnosed with PV 2 years ago. I am 52 years old and have no history of thrombosis. As a result I belong to the low risk group and I only started with aspirin and phlebotomy.

Hi can anyone tell me the difference between hydrea low dose to interferon as I am possibly switching from pegasys interferon to hydrea in the next week or so because of shortage thanks all

for more than 10 years after interferon discontinuation," Professor Kiladjian said.

Hi It was suggested today that interferon isn't the right drug for me. The symptoms / side effects are heightened rather than improving and my platelets are decreasing in very small amounts. It's being discussed by a panel who will get back to me in a week.

According to reported side effects data, about 4 % of people on interferon experience shortness of breath for one reason or another. I have been on interferon (Pegasys) for Jak2 ET since March of 2021. In 2021 I also noted that I was breathing heavily with minor exertion (walking).

I’ve now run out of doses of Interferon. I have been injecting 90ml fortnightly and my numbers have been stable for a year or so.

Interferon is a great drug - if it suits you. Louise

Anyway, has anyone experience of Jakavi of switching to it from peg interferon? Any advice/experience greatly appreciated Thankyou 😊

I wonder how low the supplies of Interferon are getting now. My prescription was short last time and today I went to collect again (Interferon 135) and it hadn't been processed at all due to the 'National Shortage'. This was a week after request. I was allowed 2 syringes today to see me over.

Are all this related to interferon side effects ? Anyone gone through this ? I am worried Thanks in advance

Hi everyone im on 90mg interferon every second week since Feb this year platelets were 1110 came dwn to 916 quick enough but haven't really moved dwn much since actually they went up again and now they are 876 is this the way for any of ye as it seems fairly slow to me even though my hematologist

Hi all,I have been on peg interferon for 10 weeks.

The study guidance excludes those on an interferon. I am interested in knowing if any of you are study participants, what dose did you use, and whether you noted effects/side effects? And also, if anyone in interferon is also taking NAC? Thanks!

Hi All I live in Herts UK and have just taken a call from my Haematology Team to advise that there is a worldwide shortage of Pegylated Interferon due to a change in factories, which won’t be up and running until next year!

Tks to everyone for ther advice on me possibly having to move from interferon to hydrea cause of shortage imi to consultant later today so hopefully all will be well and this shortage will also end soon

My preference is rather Besremi, but my hematologist is totally unfamiliar with interferon…

Hi on interferon since March this year seem to be tolerating it ok now ther is a shortage of it and pharmacist has trouble getting in I am really worried about this as what is the alternative does anyone have any advice into my hematologist next week tks

I've been on Interferon (90 and then 135mcg) since beg September last year and I wonder if DNMT3A may be causing interferon resistance.

Hi all as ye all know pegasys interferon is going off the market I am on 90mg every two weeks which I am tolerating ok even though its slow to bring platelets dwn they are 918 I'm cal r met with doctors today and they are on about changing me to hydra I have read ther are a lot of side effects to

I am aware that the side effects to interferon can be hard to manage and I am wondering how debilitating they are, do they settle down after a period of time? If so is it weeks or months?