Interferon benefits/side effects

I'd be interested in knowing more about why yr doc is suggesting the switch. Am on a similar HU regimen for ET-CALR for the last 6 yrs. I am 70. No problems with it, and don't expect to be on it beyond the 20-year point where the docs start to worry about long term effects.

Age may affect how you'd respond to interferon. In the past, those over 60 seem to have more side effects. However, I think that dosing strategies may have gotten better.

Besremi is very expensive in the US, and that may be why far fewer people are on it.

I was on interferon for 11 months for hep c.
It made me a mad woman. Beyond irritable.

I was on Interferon and Rebatron for HEP C. It was hard but made it and it helped slow down my cirrhosis and I will be 69 this year. Hopefully my organs will last another 10 years!

I have been on Pegasys for about 2 years. I have ET Jak2. It brought my platelets down into normal range within a few months. I have had no side effects. Now I am taking 45 mcg every 2 weeks, down from a weekly dose. The only problem is that it is expensive. Good luck.

Hi there just wondering do you have any autoimmune issues as well as ET?

Not that I know of

I started using Besremi (I do not live in the U.S.) in March. My platelets were at 661 (ET with JAK2). I give myself an injection every 2 weeks. After 3 injections my level was 528.

After the first injection I woke up at 1 a.m. feeling nauseous and dizzy. By morning the the symptoms were better but I felt pretty ordinary all day.
I had less nausea after the second injection but was a bit too ambitious and went to my 0900 Pilates class as usual. I lasted 10 minutes.

I have now had 5 injections (still on the starter dose). I don't go to Pilates the day after my injection.
The only continuous side effect I have is dry mouth. I just drink a lot of water (not a bad thing anyway) and use Biotene.

My hematologist wants to increase the dosage but wanted to wait until my next three monthly visit to give me time to get used to the side effects. I expect they will recur when the dose increases but appreciate they are nothing compared to heavy duty chemo. and diminish with time (unlike the effects of chemo. which are usually cumulative).

I am happy with the way things are going and very grateful I have access to Besremi (expensive but nothing compared to the U.S.).

I have had polycythemia vera for over a year. I have been on Besremi for 3 months with no side effects. I was having a high white blood cell count while on hydroxyurea for 6 months which never got to normal. As soon as I began using Besremi, it was fine. It is a very expensive drug, but depending on your insurance it may be doable. I am on Medicare and they approved it immediately. It is costing me less than $190 per month. It has done well in critical trials for ET patients and will hopefully be approved in the next year or two. Articles I have read said it reduces the long-term risk of blood clots and myelofibrosis. In a different support group, a patient said Besremi lowered his allele burden from 88 to 15 in 3 years. This is supported by clinical trials.

Hola, hace 10 años uso hidroxiurea, también soy Cal-r, pero antes de comenzar la hidroxiurea utilicé interferon x unos 4 meses. Mi experiencia no fue buena, tenía síntomas gripales con fiebre q fueron disminuyendo con el uso del mismo, pero me comencé a deprimir bastante y en ese momento fue cuando decidí dejarlo.
Actualmente tengo 42 años y con la hidroxiurea estoy bastante bien física y emocionalmente.
Saludos desde Uruguay.