Interferon journey started with ET JAK+ at plate... - MPN Voice

MPN Voice

10,342 members14,253 posts

Interferon journey started with ET JAK+ at platelets counts 550

Sam2022 profile image
14 Replies

I start interferon journey yesterday after taking 4 months of hydroxyurea. My initial blood platelets was as high as ~950 in April, then gradually decreases to ~550 till yesterday when I switched to interferon. Although I don't have any severe side-effects on HU except I felt soar knee, I decided to change to interferon considering the possibility of converting to leukemia after long term use of HU, my age is 49. My doctor is a really nice and knowledge specialist, he respected my decision and prescribed interferon for me as I exchanged my thoughts on the consequence of taking HU and other possible treatments whenever I see him. As a standard protocol, he prescribed me 45mcg (0.25ml) for the first 2 weeks, then 90mcg for the next 2 weeks and do CBC every week to monitor the blood counts. CMP is also done before taking interferon as baseline to check the adverse of interferon if any. Hope my body has response to the interferon and wish every body here find suitable and comfortable treatment to fight MPN. By the way, my case is ET JAK+.

Written by
Sam2022 profile image
Sam2022
To view profiles and participate in discussions please or .
Read more about...
14 Replies
hunter5582 profile image
hunter5582

I hope that your experience with PEG is a favorable as what I am experiencing. I would note that my platelets came down to 398 after 3 months on 45mcg PEG. They were running between 700s-900s.

All the best.

Sam2022 profile image
Sam2022 in reply to hunter5582

Hunter, thanks for your valuable suggestions in the past. It is very encouraging that you body responds to PEG well. Let's see how my body respond to PEG. So far so good, no any side effect that I was aware of.

hunter5582 profile image
hunter5582 in reply to Sam2022

Excellent plan! 👍👍

shiela23 profile image
shiela23 in reply to hunter5582

Are you taking it 45mcg every week???

hunter5582 profile image
hunter5582 in reply to shiela23

Yes. I am taking 45mcg/week. I seem to have responded particularly well to a low dose. Clear benefit with no adverse effects.

shiela23 profile image
shiela23 in reply to hunter5582

Thank you so much.

shiela23 profile image
shiela23 in reply to hunter5582

Does it cause you dizziness the peg?

hunter5582 profile image
hunter5582 in reply to shiela23

I have absolutely no side effects from the 45mcg PEG at all.

Sam2022 profile image
Sam2022 in reply to shiela23

I took 45ug for 2 weeks, then moved to 90ug for 2 weeks. Last Friday, my platelets was measured as 328. No side-effects is noticed so far except a little swelling sensentation in my feet. Good luck with journey.

Solyesh profile image
Solyesh

Sam2022 - good luck. Our cases seem very similar (I am 52 with ET Jak2+) with platelets going from an average of about 950 (with one spike to 1,400) and coming down to mid 700's on HU (ramping up dosage form 500mg/day to 1,500mg daily) over the past 5 months. Decided with my specialist to switch to PEG starting in September as we weren't getting the results we wanted yet with HU (after 5 months and at a fairly high dosage) and I started experiencing some SEs as the dose increased. He said the data is inconclusive about possible link in transformation to leukemia after extended period on HU but as we now have options fully supported my move to PEG.

Sam2022 profile image
Sam2022 in reply to Solyesh

Thanks. The long term impact of HU is still in the debate. I just want to eliminate this possibility since this is inversible as long as my body develop to it. Hope your body responds to PEG well and hear your good news soon. Best

catkinspolymer profile image
catkinspolymer

Hi Sam, I have been on HU for 24 years and no direct side effects, it has controlled my ET/PV very effectively. I have had some problems with the sun causing some basel cell carcinoma . I am now 76 still pretty active but is difficult to separate anno domni from the HU. all the best Town crier

Sam2022 profile image
Sam2022 in reply to catkinspolymer

Thanks. The bad side-effects of taking HU is just a chance for certain people not necessarily happening. HU is much more convenient than PEG as long as you are comfortable with it. Good luck and best wishes.

dogsandhorses profile image
dogsandhorses

How did your adjustment to PEG go? This post looks like it was 2 years ago. I'm thinking of trying to change from HU to PEG, and am interested how long the adjustment is, both with platelet counts and side effects.

You may also like...

Is peg interferon always slow to reduce platelet count?

further increase after 8 weeks to 180mg which I’ve been taking for past 10 weeks. Apart from...

Due to start interferon

creep up. My haematologist wants me to start interferon next month after next visit. I’m anxious...

Peg Interferon Journey

starting on Peg Interferon to be patient & to be your own advocate on your treatment. I started...

ET, platelets and stroke risk

(over 60, JAK-2 positive, another mutation and a couple of TIA episodes) I have been prescribed...

variation in JAK 2 platelet count