Interferon alternative

[Otis23]

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. I've been on it for 5- 6 months

Does anyone know what the alternatives might be?

[Solyesh]

Alternatives are likely Hydroxyurea or Anagrelide - both are used to reduce platelets in ET. If the symptoms/side effects are worsening then perhaps interferon isn't the right drug (and it is good we have alternatives) - but I can say from personal experience as well as from testimonies from many in the forum, 5-6 months is not necessarily a long time for the interferon to "work". In some people it works almost immediately and in others it can take 12-18 months or even longer. Also, do not know what dose you are on but the general rule has been start low and go slow to increase. HTH

[Otis23 in reply to Solyesh]

Thank you fir that..I'm now on 135 mg..I've started bruising so easily, I have joint pain and i literally feel like there are insects crawling over me. The team think this is being caused by interferon as its all new.

Thanks

[Solyesh in reply to Otis23]

Good that you have a team on top of it and there are other alternatives if needed. Best of luck!

[RCBr]

Hi Otis,When I commenced interferon it took over a year for my numbers to come down. My dose never went above 90mcg and I had venesections as required when my numbers went up.

Eventually the venesection was required less regularly , until it wasn't required at all...so it's worth being patient on a lower dose.

Hope it gets sorted soon.

Rachel x

[Mishie14]

I also started peginterferon low dose 45 weekly for long time then to 65 then to 90 which I have been on for 5 months. Very slow trend down platelets until 90 and now in 600’s which is my goal. Took 18 months to get here. Low and slow. I was started on hodroxy which was awful (gastro) and then anagrelide which was a different awful (cardio). Yes, options are available and it may take some experimentation to find the right one for you. Surprised by your high dose and your panel saying not working. It takes time to work but as I found out there has to be balance of quality of life and treatment results. Good luck.