I’m ET Jak2. Just had my 3rd hospital consultation and I was pleased to hear that after 9 weeks on Pegasys, 45mg weekly, my platelets have dropped from 590 to 375. All other blood levels in the normal range 😁
Good news: I’m ET Jak2. Just had my 3rd hospital... - MPN Voice
Good news
Hi. Good for you. Do you feel tired after this?
Great news. Hope you have been as adverse effect free as I have been.
Apart from being tired all the time I haven’t had any other effects. I consider myself lucky. It’s really good that you haven’t had any
Not even tiredness?
No change in the energy levels. That was part of the reason I started the PEG. The chronic iron deficiency from the phlebotomies was diminishing my energy levels. As my iron levels return nearer to normal I hope energy levels will restore. It is a bit hard to tell as I never experienced the crushing fatigue some do; more like just getting tired sooner than is normal for me. We will see how that goes.
How did your white cells react to pegasys and neutraphils?
Great news. Continued success to you. Please keep us posted of how thing go over the coming years. Best.
Great news and thanks for posting as some of us have just started on the Peg journey! Glad to hear it is working well for you!
Hello Jynx93,I have ET, Jak2+ and a month ago I have ceased taking any more medications except for a daily baby aspirin and a daily multi-vitamin. I was on HU, Statins, Lisinopril , aspirin and Omaprezol.
The side effects were horrendous and I am not absolutely sure what was causing it, although I suspect it was the HU.
I feel so much better, but I do worry about getting another TIA and a possible disability or worse, from that.
Could you tell me if you have any adverse symptoms from Pegasys please.
When I have my next blood test, if my platelets have increased to any great degree, I might have to consider a different medication.
I wish you well and happy,
Kind regards,
Marcia
The only side effect I have had is being really tired all the time. I consider myself lucky as some people have had horrible side effects. I’ve had no trouble at all with Peg and after a few months of taking it my blood levels are all back to normal. My dose throughout is 45 mcg weekly. It hasn’t changed the tiredness though but I can put up with that if that’s the only effect I get. I am also on quite a bit of other medications for Epilepsy, Diabetes and COPD and it hasn’t affected any of those or reacted with them. Wishing you well if you start on it
Thanks so much for taking the time t answer Jynx.I am going to stay on just baby aspirin and off the other four meds. until my next blood test. If I see a huge jump in my platelets, I may have to ask the heam if I can try Pegasys.
For the moment I am so enjoying feeling almost normal for a while. I can’t tell you how lovely that is.
Thanks again and I really do wish you well and happy.
Hugs,
Marcia
Thank you!