Good news

[Jynx93]

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 😁

[Kelly2]

Hi. Good for you. Do you feel tired after this?

[Jynx93 in reply to Kelly2]

I seem to feel really tired all the time but I am surprised at how quickly and well it’s working. It may be encouraging for others just starting on this path.

[Hopetohelp]

Wonderful news and very encouraging

[Jynx93 in reply to Hopetohelp]

Thank you, really pleased how well it’s worked so far

[Kelly2 in reply to Jynx93]

What about pruritus?

[Jynx93 in reply to Kelly2]

Nothing at all apart from tiredness

[Kelly2 in reply to Jynx93]

Did you have it before?

[Jynx93 in reply to Kelly2]

No I’ve been lucky to have never had it

[hunter5582]

Great news. Hope you have been as adverse effect free as I have been.

[Jynx93 in reply to hunter5582]

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

[Kelly2 in reply to hunter5582]

Not even tiredness?

[hunter5582 in reply to Kelly2]

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.

[otisthedog]

How did your white cells react to pegasys and neutraphils?

[Jynx93 in reply to otisthedog]

White cells were super high before I started, now all levels are back to normal that’s after 9 weeks of Peg

[Meatloaf9]

Great news. Continued success to you. Please keep us posted of how thing go over the coming years. Best.

[Jynx93 in reply to Meatloaf9]

I will do

[Solyesh]

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!

[Jynx93 in reply to Solyesh]

Good luck on your journey, hope you have an easy one

[Mardigras]

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

[Jynx93 in reply to Mardigras]

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

[Mardigras in reply to Jynx93]

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

[Jynx93 in reply to Mardigras]

The same applies to you, glad you’re feeling good

[Mardigras]

Thank you!