Hi everyone - I’m new to this community but have been reading your posts for several months and have already learned so much from all of you. Thanks! I was diagnosed with ET at age 58. I’m 62 now and began HU 500mg/day at 60. I also take baby aspirin, one in the morning and one in the evening. My platelets are around 700k. I have the Cal-R mutation. I recently switched to an MPN specialist in NY (got her name off this groups’s list, thank you!). She is recommending I switch over to a once weekly shot of interferon to get my platelets down to 400k range. I tolerate the HU and aspirin well (no side effects) and I’m active and in good health. My question is, for those of you who are taking interferon, what side effects have you experienced and have you seen a meaningful improvement in your platelet counts? Thanks in advance for your thoughts.
Kind regards,
Jay
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jevans59
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Hi Jay, I have PV so can only comment on interferon side effects. I am on it for 15 years, sinice i was 58. At the beginning I had a very firm belief that it was the better option so I have stuck with it. First it is not necessarily fast acting so you might have to be patient and to take the HU in tandem while it takes effect. Second people have had different reactions to it. From intolerance to being ok. You can read the side effects on line but not everyone has them. I found it hard at the beginning. The flu symptoms were strong. Always took it at night with paracetamol and more the next day. This eased with time. But now I take a low dose of .45 every 10 days. If I take 90/21 days I get the flu like symptoms back. I also suffer from fatigue regularly. I may have had periods of mild depression. It's easy to blame PV and or interferon for all that ails us but it can just be life. As I have PV and the JAK2 mutation I understand that interferon may have a beneficial role to play in keeping that under control. I don't know about interferon and Call R. Good luck with your decision. Mairead
Hi Jay. I have ET and Jak2+ am 63, live in Australia and was diagnosed in Sept 2014. I have been on treatment since 2016 when I was 58. I spent 2 years on HU but it wasn’t a good fit for me. I kept on getting hit with massive fatigue bombs and I was slowly edging towards PV. In late 2018 I transferred to pegolated interferon (Pegasys) and to be honest it’s been brilliant. It’s not for everyone ( ie side effects) but I’m in my third year now and have gone from injecting 90 micrograms weekly to now injecting 90mcg’s every here weeks with my goal being monthly injections. I do still get some fatigue in my injection week ( I inject on a Sunday night) but it is getting much more manageable now that I’m pushing out my injecting frequency. It is definitely worth an honest and open discussion with your haematologist. Cheers
Hi jevans59. Have only been on Pegysus for around 8 weeks and last blood test showed platelets hadn’t been reduced so my dose increased to 65mcg from 45mcg(although I think I was underdosing at the beginning due to not getting rid of air bubbles in syringe first so probably stupidly only giving myself about 20mcg😂. It’s really easy if you pay attention to instructions given by the nurse unlike myself whose mind wandered off in the clouds). As you will have seen by previous posts it can take a long time to work so I would recommend starting sooner rather than later if Pegysus is going to be your choice. No side effects on my part, just patience required. Good luck
Thank you for that, glad to know you are not having side effects. My specialist said it would take about 3 months of once per week injections to start to see results. Don’t know dosage plan yet. Funny about your mind wandering; I know that well!
I am a 58 year old male - been on Peg Interfron for 4 years.
Counts have dropped from 1250 to 150 over time.
Have gone from one weekly injection of 45mgs - to a bi-weekly injection of 90mgs.
Recently though have been told to inject 90mgs once every 3 weeks.
The biggest side effect I get is muscle aches at night occasionally.
I am also on low dose aspirin and warfarin for a mechanical heart valve which I had done in 2002. I take 2 paracetamol each night to prevent any potential muscle aches overnight.
Peg works well for me - I can only sing it's praises.
I’ve been on Pegasys for nearly 6 years now and it has worked very well for me. Brought my platelets down quickly from 1100+ to around 300 and no significant side effects.
I get a bit of dry skin and itching plus some occasional mouth ulcers but both are easily treated with over the counter medication.
Once my platelets were in normal range I reduced the dosage from 90mcg to 45 and extended the interval between injections, so I now just inject 45mcg as a maintenance dose every 4 weeks to keep things ticking over.
Thanks - I started on 45mcg and increased to 90mcg once I’d had no side effects from the lower dose.
Each of us is different and you’ll need advice from your doctor but that approach seems to suit most people.
I see occasional reports from people being prescribed starting doses much higher than that and finding them difficult to tolerate so if you can get away with building up slowly that would be my suggestion but of course I’m not medically qualified..!
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