Hi,
I had been on Pegasys 90mcg from the start in June 2018 until December when my haematologist upped the dosage to 135 mcg.
This is starting to cause me issues so I was wondering if anyone else had been on 135 mcg as 45 & 90 mcg seems to more the norm.
John
I started on 90 every other week on Dec 6. I went to 90 every week in mid-Jan. In mid-Mar I went to 180 per week. 90 per week brought my platelets and whites to mid-range normal. My hematocrit went from 48 to 47 and my hematologist wants me below 45. So far I am doing OK with side-effects.
I think MPNs are very diverse conditions and Pegasys works differently in different people. Previously I was stabilized on 1000 mg per day of HU. This worked fine until I developed an ankle wound that would not heal.
John
The general rule is start low and build up dosage slowly. I started at 45 mcg ever two weeks, then weekly, then 60 mcg, 75 mcg and 90 mcg. Had no side effects.
How high are your counts? Pegasys can take a while to work. I’ve been on it a year now and WBC dropped from 12 to 2.5, Platlets 600 to 150 and RBC stubbornly resistant, 6.2 to 5.9. Still need occasional venesections so not complete haematological response but getting there! Can take several years.
Personally I’d prefer lower dosage and occasional venesections rather than fast track, assuming my other bloods within range.
Best Paul
Hi Paul,
Thanks for your thoughts and in retrospect I agree with you that the slow path with occasional venesections is the best.
As for my blood readings I don’t have access to them at the moment as I am in hospital in a cardiology ward recovering from an infection.
I will give an update on my experience when I finally get out, hopefully next week.
John
Hi John, my doctor started me off with 90 mcg every two weeks and then increased the dosage to 90 mcg every week and again to 135 mcg every week. It took about a year for my haematocrit and platelets to normalize and I had to supplement with venesections. Luckily I did not suffer adverse side effects other than feeling a bit more tired and ‘spaced out’ the weekend of the injection. I now only inject 135mcg every third week.
Hi John,
I have ET with mpl mutation and was recently changed to 135mcg weekly injections, with a follow up in a couple of weeks. I'd posted on the forum a little while back also querying the dosage as the side affects have been pretty bad for me (flu-like symptoms, fatigue, and just not feeling great most of the time).
I'm hoping that after my next follow up they'll see some progress, as they've suggested I might be able to move to having an injection every 3 weeks which might help. Maybe 135mcg is the new norm, but I'll def have a few questions for the hematologist when I go back.
Also having a BMB this week to top it all off!
Ben
I started at 45mcg Pegasys last March 2017. Stayed on that 3 months, then increased to 60mcg for 3 months. I’ve been on 90mcg for about 6 months. I’m considering tapering back down to 60, and even 45. My numbers are good, but the extreme fatigue is starting to get the best of me. I’m trying to figure out if the disease or the Pegasys, is increasing my fatigue.
I felt great on the 45 & 60mcg.
I just think starting at 90mcg is extreme. I’ve read the lowest dose tolerable is best for long term use.
Best of luck to you! and Aloha~ from Hawaii
My 16 year old son (Jak2 PV) is on 180 mcg, which has gradually increased from starting dose of 45. He has no side effects at all, feels he has more energy. He has not had any TIAs now for a year ( prior to this had 4) but his platelets still not improving >1500. Still has venesection every 6 weeks as they want to keep his HCT < 0.45 . He has had 23 venesection in 18 months since diagnosis. Wishing you well and hopefully you will start to tolerate it better and see some results soon.
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