Experiences with

Interferon beta-1b

Blood draws every 2 months and titrate interferon as needed. Overall — I’m pretty healthy, interferon is working. No signs of progression. Focus is preventing blood clots. My symptom burden isn’t bad. I’ve fully recovered from stroke and PE.

Did Peg, then Besremi for 5 years, but could not tolerate interferon. On Jakafi now for almost a year. Platelets down from 1.1 mill to just over 400,000. But other numbers, wbc, LDH, blasts not looking great. Did a BMB 3 weeks ago. Definitely has progressed to myelofibrosis.

If not, then it will be interesting to think about perhaps an increase in the interferon to see if that would move the needle..but we will cross that bridge when and if we need to.

They basically said my clot has gone from acute to chronic but when i asked if it can be removed as my liver function has got worse over the period of time of having the clot they said due to the other factors of interferon treatment and insulin use etc with the diabetes they can't it is just treatment

been posted yet: https://www.docwirenews.com/post/does-the-use-of-statins-improve-survival-in-essential-thrombocythemia-polycythemia-vera link to journal article: https://onlinelibrary.wiley.com/doi/epdf/10.1002/cam4.6528 Another related link pointing at potential synergism between statin use and interferon

It’s only now I feel I’ve reached the absolute bottom & am in despair of what to do that I’ve come across articles that show a possibility that there may be a connection with commencement of interferon treatment.

Hi all I managed to source some interferon thankfully as I'm in Ireland and shortage is still bad I have been changed to 135mg a month now instead if 9omg every 2 weeks with this shortage I am due to give this injection tonite but I have a question I'm all week with a head cold as in cough not chesty

Hi has anyone been able to source interferon from any pharmacy in Ireland as I'm off now as in shortage again platelets 964 only on aisprin hospital are happy enough to keep me monitored for now tks to everyone in advance

Since I was diagnosed in 2017 I have been on Hydrea, Interferon and Angerlide. Recently my platelets spiked over the millions so my MPN Specialist, Dr Gotlib at Stanford, suggested this trial.

I was on 135mcg of Peg Interferon. I wanted to try Bes during the shortage to see if it suited me better. So far I’m really not sure. It seems to have caused me stomach and intestinal issues. I have terrible diarrhea and really smelly gas. Immodium helps.

When I was 49 I had a hip replacement and a year later I felt off so the doctor ordered a blood test in which it came back my platelets being too high. (1000) I was sent to a specialist straight away and was put on aspirin then Interferon.

There a publications stating that this mutation could lead to interferon resistance. I would very much appreciate your thoughts on this.

I can't take interferon so what could I ask the Doctor?

It's only with thanks to this forum that I learned about and pushed for Pegasys Interferon near the beginning of my PV journey. Because I was below 60 years of age I was considered low risk and offered aspirin and venesections only, the side effects of which were not too nice.

She mentioned Jakafi or Interferon. I have looked into both and after reading about weight gain being a very common side effect of Jakafi, I am worried about starting this treatment and was wondering about Interferon? Has anyone got experience of this drug or both? Thanks

I have read that interferon can cause heart damage, I have not had heart fluttering or high blood pressure until recently, not sure if an interferon side effect. Anybody else had this problem ? Interferon otherwise is brilliant for me in keeping platelets controlled.

Whilst I’ve been on Pegasys and Besremi I’ve been asleep at the wheel regarding new potentially game changing drugs. Now that I’ve had to switch to Ruxo I’m more focused on other options if/when Ruxo stops working. I know there are quite a few new drugs becoming available but as far as I can tell

Platelets were high at 1500 so was prescribed interferon 135mg. I could only tolerate 9 months after suffering every side effect it could offer! This brought me down to manageable levels, just on aspirin until now. Platelets are at 2000+ so have to take Hydroxy. Is the dosage negotiable?

Hi does anyone know if interferon is still as hard to source as it was as my pharmacy is finding hard to get it in again 🤔Tks to all in advance .

Hi to everyone I just have a question I have been storing my pegasys interferon in my fridge we have been without electricity for 9 days and i am wondering can I still give myself this as I am due to take it the end of this month my pharmacist isn't sure that I can and my hematologist nurse is