Pegasys starting dose for PMF

[Goldie41]

Hello everyone! I have primary myelofibrosis since February 2021 Doctor put me on Hydroxyurea because of elevated platelets(1700). Now, because of my age(41 yrs old) want to put me on Pegasys but with a starting dose of 135 mcg/week and 500 mg Hydrea/day. I have read that must begin with a lower dose of interferon because of the adverse effects. Now platelets have reached 1200 because the reduction of Hydrea. I am really worried how will I react at 135 Pegasys. Has anyone the same situation like me? My hem dr. is not a MPN specialist.

[hunter5582]

Here is the Pegasys protocol for MPNs from NHS (NSSG).

nssg.oxford-haematology.org...

Generally speaking, we start on a lower dose and titrate up to the level required. Managing the transition from hydroxycarbamide to Pegasys can be a bit tricky. Ideally, it should be done in consultation with a MPN specialist.

Wishing you success moving forward.

[monarch5000]

A 135 mcg starting dose is irresponsible and ignorant because the side effects could be so miserable (malaise, physical weakness, cold sweats) you might think you are dying and want to go to the emergency room. There have even been cases where an overly high starting dose made patients suicidal. Interferon experts suggest 45 mcg as the starting dose for 2-4 weeks, then gradually increase in increments of 20-25 mcg over a period of several weeks.

[lizzziep]

I started on 45mcg peg, combined with Anagrelide, my platelets dropped dramatically, so was taken off Anagrelide, then platelets settled down.

[Carol0925]

I started Pegasys this week, 45mcgs was advised by my Haematologist. Hope you’re ok and managed to query your dose with the Prescriber. Please keep us posted Goldie41. Good luck.

[Wyebird]

hi I have ET. I think 135 is a large dose to start with. It’s usually 45 as it can drop your other blood counts quite low. How much hydroxi do you usually take? Maybe ask your doctor to consult with Guys hospital.

Good luck

[Goldie41 in reply to Wyebird]

I take 2 tablets/day Hydrea

[Wyebird in reply to Goldie41]

Wow that I consider a low dose. I really would insist on starting slow. Everyone on here I believe start on 45. I should have but pharmacy made an error hence 90. I’d insist on a weekly blood test for a few weeks whilst the regulate your dose. Do keep me informed. Good luck

[ainslie]

starting at 135 is not wise , most start at 45, you could keep the Hydroxy dose a bit higher initially and slowly increase the Peg. Sounds like your doc has no idea, if you can it’s probably wise to look for a better one or consult a MPN expert from time to time to get direction, the expert can be in touch with your local Haem to keep him/her pointing in the right direction

[Biscuitlove]

Hi Goldie41. I was diagnosed with ET in June 2023 and had a very high platelets count of 1600+. My Hematologist put me on 135 and like you I was also happy worried that it was too high and what the potential side effects will be. My side effects were mild fatigue (manageable) and sometimes I would have a shooting spasm down my leg. I'm not sure if that was relating to the medication or potentially down to something else. Either way. It wasn't too bad and subsided after awhile. All in all my experience has been good - my platelet levels have come down and next month (6 months later) I'm on track to move to aspirin. Hope this helps. Any Q's feel free to message me directly. Good luck 🤞

[Solyesh]

Hello - I started Peg at 180mcg fortnightly and it did bring my platelets down fairly quickly - biggest problem (initially) was pretty bad fatigue day 2 after injection. After 2 months at this dose my liver readings came back very elevated and we backed off completely for 6 weeks. When liver enzymes came back close to normal we started the Peg again but this time at half the dose (90mcg every two weeks). I have maintained that dose for a year now. If I had to start over I would start at the lowest possible dose and increase as necessary/tolerated. Also, it can take a while for Peg to start to to work so patience might be needed (i.e. if one does not see results immediately or in two months time have to have a serious conversation with MPN specialist to determine if higher dose is required or just more time) - it is almost as much an art form as a science (the right dose for each patient).

Good Luck!

[jafar09]

Hi Goldie41,

Have you checked clinical trials for PMF with bomedemstat ? I have read a couple of articles about it and it looks promising. I’m on clinical trial for PV and so far I’m getting better in terms of symptoms reduction and MF grade. I had MF-1, a year to 6 months ago and now it cleared up. I have been taking the pill since July 2022. The trial is pretty intense, won’t lie to you, but I’m 38 years old, and can resonate with your situation. Hope this helps. The pill official name is IMG-7289.

ashpublications.org/blood/a...

[ETyears]

All the best for Christmas. I would commence on 45mg of pegasys if it were I as this is what my specialist wanted 4 years ago. If you have an adverse reaction it will be your problem not that of the GP. I worked my way up to 135mg for a period of time. Take in consideration we all react different to medications. I made the transition from Hydrea without any problems.

The decision is yours as you are the person taking the interferon not your GP.

Wish you all the best.

[Goldie41 in reply to ETyears]

How many Hydrea have you taken when you transitioned to Peg?

[ETyears]

I had taken up to 3x500 Hydrea problem here was I could see a secondary cancer was now highly likely. Requested to commence 30 days later to Pegasys .