Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for mjfp49 @mjfp49

ET with Jak2 mutation diagnosed in 2018 but clearly was walking around with it for quite a few years before diagnosis.
Have a HU dosage question.
I am reading that if you take 2 HU a day 500mg each.
Taking 1 in the a.m.
And 1 in the pm seems to keep numbers stable longer.
Has anyone else been given this suggestion by their O/ H?

Jump to this post

@mjfp49 My O/H told me to take HU twice a day. He didn't specify when, and I take one 500 mg capsule with breakfast and one with dinner. Seems to work for me - I was diagnosed in October, 2023 and HU brought my platelets down from 792 to right around 200 very quickly - and I've been stable since then.

REPLY
Profile picture for makindoilies @makindoilies

Yes for 15 years plus.

Jump to this post

@makindoilies
So you would say your platelet count stays stable longer this way...not just to ease sluggish symptoms during the day.
I have no trouble with energy level on HU ...so my interest is the stabilization factor.
Thanks.

REPLY
Profile picture for debhammel @debhammel

@mjfp49 My O/H told me to take HU twice a day. He didn't specify when, and I take one 500 mg capsule with breakfast and one with dinner. Seems to work for me - I was diagnosed in October, 2023 and HU brought my platelets down from 792 to right around 200 very quickly - and I've been stable since then.

Jump to this post

@debhammel
Thanks...I'm thinking splitting the dose might be more helpful.

REPLY
Profile picture for kat260 @kat260

@cec2 Hi and thanks for your reply. I haven't checked in here for a while either.
Interesting. As time goes on, I'm sure we'll find out more about the effects of the covid shots and covid itself. Fyi, I had 3 shots of Astra Zeneca (the one related to thrombotic events about 2 weeks after the shot, in people over 50). My platelets started increasing a few weeks after my first shot. I only know this because I had regular blood tests to monitor other conditions and my GP showed me on a graph which was pretty obvious. I have had covid 3 times and don't do any covid boosters.
Regarding the different protocols in treating ET, I thought I'd give you an update as my treatment plan has changed dramatically.
With my original Haematologist I was only on 1 asprin 100mg, platelets 900's. When I changed to an MPN specialist 3.5 months ago, I increased to 2 aspirin and added 2 x 500mg Hydroxy per day. My platelets dropped from high 900's to high 200's in just 8 weeks. I was then reduced to 1 aspirin, 1 Hydroxy. I'm currently on 1 Hydroxy 3 times per week but I also started Pegasys 45mcg mid July. I've now had 2 increased doses of 67.5mcg. So far so good with main side effect being fatigue but it's manageable. I feel very lucky so far and hope I will remain well as the dose is increased with the aim to drop the Hydroxy altogether.
Platelets 326 last week, white cell count had been increasing slightly but now in normal range. Liver numbers also slowly increasing, still higher than normal range but nothing crazy. I'm now 61, also have family history and a moderate calcium score so I am also high risk.
Wishing you all the best in your treatment. It really is a lottery and there seem to be varied treatment plans depending on who you see. My MPN specialist is confident that there will be other treatments upcoming in the not too distant future so I am ever hopeful for that.

Jump to this post

@kat260
Thanks, kat, and prayers that your new treatment continues well!

REPLY
Profile picture for debhammel @debhammel

@mjfp49 My O/H told me to take HU twice a day. He didn't specify when, and I take one 500 mg capsule with breakfast and one with dinner. Seems to work for me - I was diagnosed in October, 2023 and HU brought my platelets down from 792 to right around 200 very quickly - and I've been stable since then.

Jump to this post

@debhammel
That's such good news that your treatment is working so well! Thanks for sharing.
How are your red and white blood cell counts, and have you had any neuropathy?

REPLY
Please sign in or register to post a reply.