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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone Taking Pegylated Interferon For An MPN And If So How Bad And How Long Did The Side Effects Last?

A myMPNteam Member asked a question 💭
Westminster, MD

I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more

March 31, 2021 (edited)
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A myMPNteam Member

Thank you all for your feedback. While Pegasys helped my blood levels, it did not help my itching, which was intense at times. I switched to Jakafi about 8 months ago and it's been a game changer. It took a while to get the right dosage, but not only did it take away most of my itching, my labs have been the best and most consistent since I was diagnosed. I've progressed from getting biweekly bloods draws to every other month and hope to ultimately only need quarterly draws. I feel much better, plus I don't have the worry of triggering a itching attack.

February 7, 2023
A myMPNteam Member

I’m currently on Pegasys. HU was a nightmare drug for me I’m still trying to recover from the damage. Thankfully Pegasys helps correct that damage. It also helps or alleviates away several symptoms that just make living miserable for me. Such as drenching night sweats several times a night. Gone! Itchy throbbing feet. Gone! Bone and joint pain. Manageable far from gone but mobility increased. My ocular migraines are rare. Side effects I’ve noticed...extremely dry skin. Have to drink a ton of water with both but it seems worse on Pegasys. My mood has chgd. Little depressive. My anxiety has increased and I’ll act like an itchy bee for no reason really. I’m having break through bleeding, they say it’s my bc. Never had break through bleeding in 20 years. It didn’t start till pegasys. I swear it’s like they never wish to blame the drug for anything and we need to know the side effects

April 4, 2021
A myMPNteam Member

Been on pegasy injections every 2 week. Itching flares up then settled down for a time. Fatigue has stayed with me but on the whole life is good

April 24, 2023
A myMPNteam Member

I inject interferon every 2 weeks , for 2yrs , mild side effects soon went. I do suffer with tiredness and fatigue more, but my age doesn't help. Lots older than you !! My numbers are dropping but not at normal range just yet . But getting there. Otherwise well and enjoying my retirement.

February 19, 2023
A myMPNteam Member

I was on Hydrea for 2-1/2:years with severe diarrhea and my platelet count didn’t change. In August 2022, my oncologist switched me to Pegasys. Wow, what a difference in my life! I am now injecting every other week and labs monthly which is better for my schedule. I even traveled to Scotland in September and took the Pegasys with me to stay on track. My last labs were 483! No side effects whatsoever. I’m so glad I’m on Pegasys as it can also help put me in remission of ET JAK2,🥰

December 17, 2022

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