Good news: I’m ET Jak2. Just had my 3rd hospital... - MPN Voice

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Jynx93 profile image
23 Replies

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 😁

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Jynx93 profile image
Jynx93
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23 Replies
Kelly2 profile image
Kelly2

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

Jynx93 profile image
Jynx93 in reply toKelly2

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 profile image
Hopetohelp

Wonderful news and very encouraging

Jynx93 profile image
Jynx93 in reply toHopetohelp

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

Kelly2 profile image
Kelly2 in reply toJynx93

What about pruritus?

Jynx93 profile image
Jynx93 in reply toKelly2

Nothing at all apart from tiredness

Kelly2 profile image
Kelly2 in reply toJynx93

Did you have it before?

Jynx93 profile image
Jynx93 in reply toKelly2

No I’ve been lucky to have never had it

hunter5582 profile image
hunter5582

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

Jynx93 profile image
Jynx93 in reply tohunter5582

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 profile image
Kelly2 in reply tohunter5582

Not even tiredness?

hunter5582 profile image
hunter5582 in reply toKelly2

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 profile image
otisthedog

How did your white cells react to pegasys and neutraphils?

Jynx93 profile image
Jynx93 in reply tootisthedog

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

Meatloaf9 profile image
Meatloaf9

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

Jynx93 profile image
Jynx93 in reply toMeatloaf9

I will do

Solyesh profile image
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 profile image
Jynx93 in reply toSolyesh

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

Mardigras profile image
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 profile image
Jynx93 in reply toMardigras

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 profile image
Mardigras in reply toJynx93

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 profile image
Jynx93 in reply toMardigras

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

Mardigras profile image
Mardigras

Thank you!

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