Just started Pegeses/Interferon

[Realtorlin]

Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets are low also, I am very nervous. Any insight would be much appreciated. Thinking of all who are in this fight and wishing you all the best.

[AndyT]

I have ET not MF but have been on Pegasys for 10 months and very pleased with it - no real side effects. Hope it works well for you too.

Best wishes

Andy

[Realtorlin in reply to AndyT]

Thank you for your reply Andy. I am happy to hear you have not had any side effects. So far, I just have a fever. Take care of yourself.

Linda

[beetle]

Hi, Realtorin. It sounds like I am in a similar position to you in that I have MF, transfusions every four weeks, give or take a week, and my platelets yesterday were 33. I also take Jakafi 15mg twice daily although I expect that dose to reduce next time I see haematologist. I am interested to know why interferon has been added in your case. What is hoped to be achieved by it?

[Realtorlin in reply to beetle]

I was on 20 mg of Jakafi, then 15, then 10, and now 5 because of frequent transfusions. The doctor added Pegeses /Interferon hoping that my numbers will get better and transfusions will be less. I believe the numbers get worse first. My platelets hover around 100. I wish you the best, this disease is awful. I am scared to the core of my being.

Linda

[JediReject in reply to Realtorlin]

I'm feeling for you Linda. . You're right it is an awful disease and we all cope in different ways. It's hard for people who aren't going through a chronic condition with an unpredictable outcome to fully appreciate how it affects you both physically and mentally. .

I'm on record here saying I felt envious of an ex work colleague I met at hospital a few years back with cancer that needed immediate attention. In the space of a couple of months he had his op, chemo, and follow up appts which showed he was in remission. . Of course he was one of the lucky ones in that it was caught early. The point is he was able to pick his life back up and get on with it albeit with regular check ups. Whereas we are living day to day with ours and at times it's like your life is on hold. If that makes sense. . ,

Please keep battling on difficult as it can be. . Chris

[Realtorlin in reply to JediReject]

Thanks Chris, and yes what you wrote makes total sense to me. I just had a conversation with a friend of mine saying that exact same thing to her. I have no control on what is happening to my body and taking theze drugs scares me to death. Living with this uncertainty is often too much for me to bear. Thanks so much for responding back to me.

I wish you the best and hope you are doing well.

Linda

[JediReject]

Hi Linda, , I think the combination therapy is a very forward thinking option and to be honest I wish I'd had the chance to try it. I did my best to press my local Hem to try something alongside my Rux such as Hydrox for a start but he had absolutely no appetite for it. That was the final straw for me and I asked for referral which culminated in my BMT. So at the stage your MF is at and given the limited choices if Rux isn't bearing fruit I would say embrace it, though I appreciate how nervous you must feel.

You are blazing a trail not just for yourself but for others and if it causes any major issue they will adjust or take you off it I'm sure. Good Luck with it. Chris