interferon or Jakafi

[JHigelin]

Hi everyone

I was diagnosed with PV about 11 years ago and have been on Hydroxycarbamide since with venesections from time to time. I have now reached the point where Hydro is not really working anymore in controlling my platelets and my red cells are much too low so my consultant suggested moving on to another treatment. Shame in a way as i had little side effects with Hydro, some fatigue, dizziness at and mouth ulcers at times but nothing really debilatating. 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

[Paul123456]

Interferons are a great drug if they work for you. Potentially disease altering and some would say as close to a cure as you can get. This is what my Hem said about 4 years ago.

I’ve unfortunately developed an autoimmune problem with Pegasys/Besremi (possibly too many Covid jabs, had 9 so far!) so recently had to switch to Ruxo. However I’ve been on Pegasys since 2018 and it’s been great at reducing my JAK2 from over 80% to c. 15%.

Have you had a recent BMB to check exactly where you are?

Best Paul

[JHigelin in reply to Paul123456]

Hi PaulThanks for getting back to me. I had a full blood test done on Friday requested by my consultant prior to starting me on Ruxo or Interferon. I have a phone appointment with her on Tuesday so I guess she will discuss the results with me then. How easy did you find having to inject the drug? I'm not good with needles so that's a bit of a worry.

[ainslie]

i tried both, I could not tolerate Peg but many can and many do very well on it and for some it can alter the marrow and lower AB. I am on Rux , doing well on it, BMB improved on it and AB allegedly is now 1.08%. Re weight gain, yes it is more easy to put weight on IF you allow it, my experience is it is calorie related, my view is I have to eat less calories probably but what is important is they should be better calories, less or no sugar and refined carbs, instead plenty protein at each meal plus veg and no more complex carbs than you need, instead or in addition more exercise. Another thing I have realised is having ones thyroid optimised makes a difference to burning calories, in my my case especially when on Rux . I am on high dose Rux 22.5+20, my weight is no higher than when I started but only because I eat well (no dieting) and exercise every day.

[hunter5582]

I was refractory to and intolerant of HU. I responded much better to Besremi. It has been more effective and easier to tolerate. My JAK2 VAF has reduced from 38% to 10%. I also feel better on Besremi than before I started it.

I would also consider Jakafi if my symptom profile indicated it was a better choice. There is recent evidence that Jakafi may also have the benefit of reducing JAK2 VAF.

We are all different in how we respond to these medications. My response does not predict yours. We each need to be clear about our treatment goals and risk tolerance. This is what must drive our treatment decisions. Controlling blood cell counts (reducing risk of thrombosis/hemorrhage) is only one of the potential treatment goals. Other goals include preventing progression into MF/AML, overall survival, and managing MPN-related symptoms that impact quality of life. The patient is the only person who can decide what their treatment priorities should be and what risks they are willing to take to achieve the treatment goals.

It sounds like you are on the right track shifting to Jakafi or Besremi. It is not a black and white decision. The decision rests on your treatment preferences. Note that the decision is not final. You can always try one option then shift if it is not suitable,

Wishing you success moving forward.