High platelets, Jak2, ET, and pre-fib new diagnosis

I am surprised you are starting on Pegasys first. From what I have read Hydroxyurea is usually given first. I had to wait a few days for my bone marrow biopsy report. What is pre-fib?

I was diagnosed in June 2022 with ET/JAK2. I had extensive labs and a bone marrow biopsy, My platelets were 621 at start. Hematologist started me on 500 mg Hydroxyurea daily. I started with headaches and had a vertigo attack. I saw ENT and had different tests that were negative. After taking a
short break from Hydroxyurea she put me back on it every other day. Headaches are less and my last labs were great…platelets 498. I am hoping I can continue every other day.

There is also another site that I found. It is healthunlocked.com. You can read others’ experience. It is situated in England but voices are heard from around the world.

Good luck with your journey,

Eileen

Hello. I'm 62 and was diagnosed a month ago with Jak2 and ET. Had my bone marrow biopsy last week and it's consistent with ET, no indication of Lukemia or Fibrosis.

My blood count was up to 521 when I started Hydroxyurea and after about 2 weeks it was down to 400. Doing 1000mg a day. Hope to drop that down to 500 sometime. Also doing asprin.

Feel fine. Hope all is well with you. Guess it's something we're going to have to live with.

Older people used to be discouraged from taking interferon/Pegasys, but I understand the dosing strategies now alleviate a lot of side effects.

It is extremely expensive ($6,000 per month last I looked), and off-label for ET. Lots if insurance and Mrdicare supplements won't pay for it. My guess is that's a reason it isn't more widely used in the U.S.

I am 78 and my Medicare drug plan mail only charges $10.00 for 90 days of Hydroxyurea 500 mg tablets delivered by mail. I am surprised at the cost of Pegasys.
Eileen

Hi Eileen, thank you for sharing your experience. I believe they are starting me on Pegasys because I went from 625- 930 in the last 4 months. Then my biopsy showed signs of pre-myleofibrotic conditions. We did discuss Hydroxyurea but thought it best to go a bit more aggressive. Still waiting to see if drug is approved.
Thank you for the other discussion forum. I will look into that. I'll also post my progress. Hope you can do your every other day treatment and get into a rhythm with that. Blessings, Rick

Thank you for sharing. Looks like we are on a similar journey. Please share if anything changes along the way for you.
Blessings, Rick

Wow...yes I had the initial prescription denied by my carrier and they had it sent to their specialty pharmacy. I'll repay back the end result and pricing. I have an HDP with my employer and have reached my deductible. Wow again $!

Hi all, I thought you might appreciate these related discussions:

- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- People living with ET and taking Hydrea: Anybody setting records? https://connect.mayoclinic.org/discussion/anybody-setting-records/
- I have JAK2 ET and MPN: Anyone else have these symptoms?https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/

@mortysdad, in the title of this discussion you state "High platelets, Jak2, ET, and pre-fib new diagnosis" What does pre-fib mean?

Hi cowestwinds,

I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June 2022 I had daily headaches. I was taken off it for a month while I had some tests done by ENT.

I was then put back on 500 mg of HU every other day. I saw hematologist yesterday, had CBC…platelets went down second month on this regime to 434. So I can continue every other day. I have been on a blood thinner for AFib so have had that protection.

Hope you have a wonderful 2023. Eileen

Thanks Eileen.

I had terrible mouth sores with HU and went off for about a month until I could get them under control. My platelets went back up to 520 but stabilized there. I went to a MP specialist and said I could drop to 500 HU a day, but because of my complications and also the fact that I have a problem with basil cells and possible skin cancers that he wants me to go to Pegasus. Waiting to see if insurance will cover.

What I did learn is that studies have shown that the numbers don't matter as much as the fact that we have the Jak2 mutation. Just having the mutation can lead to the clots, etc. So while you obviously don't want the numbers to go crazy high, you don't need to go crazy with the drugs to try to get them down into the 400's. Very interesting.