JAK2 Mutation - Effects and Questions

Thank all of you for the good info and good wishes. I'll make note of your suggestions, too. I'll also update after my next doctor's appointment near the end of September.

Stay well.

Hello. I’ve had relatively little itching since I started HU about five years ago. Curiously, my right shoulder blade area is where it happens most often and my hands were giving me problems. The backs of my hands would develop little pinpoints like tiny scabs and they would begin to itch like crazy. And my nails, never good, just started splitting and breaking no matter what I did. Then I tried Naturewell Retinol Cream. It sounds like they are paying me (not) but it is amazing. Sam’s sells it at a great price and it’s a little more on Amazon.
Since I started using it nightly, my hands are completely itch free and my nails have stopped cracking and breaking. Very little of the stuff goes a long way. It feels lovely and I’ve started using it as a body lotion. I had tried a very expensive crème recommended by the MD, the oatmeal lotions and nothing worked until this. Maybe try it and see if it works.

Really glad to hear you were diagnosed before having a stroke or heart attack
I, too, am Jak 2 positive but wasn’t diagnosed until I had a stroke and two dvds while recovering. Initially had two phlebotomies but once I was on Hydroxyurea no longer needed. Been on since 2018 and no side effects (no itching). Know everyone us different
Did have bone marrow biopsy once diagnosed, which showed no damage to bone marrow Wishing you the very best. Keeping informed is great

Yes, HU is a chemo med.

But, for most of us, side effects are minimal. For me, starting my third year on HU, there have been no adverse effects at all.

And yes, there are many things worse than ET!

Still, it is a serious condition. Please give yourself permission to feel scared and weary.

You're among friends here.

Thank you. I'm happy about that, too.

This is all new for me, and I'm not looking forward to probably having to go on a chemo med. I know there are many things worse, though.

Take care and God bless.

We're sorry about your diagnosis, but happy you've found us!

Hi,
Is this discussion still active?

I just found the website yesterday and have been reading threads, but most seem to be old ones. Are there current active ones too?

I was diagnosed with ET in April, JAK2 positive, everything else normal, no symptoms. Other causes ruled out with tests but no bone marrow biopsy done. Platelet count has been steadily rising for a couple of years, now 581. Specialist put me on low-dose aspirin daily and said if count goes over 600k, which it likely soon will, he'll put me on Hydrea. I don't like the idea of that but I don't want to have a stroke or heart attack from a blood clot. He said that's the biggest danger with ET and that I'm high risk for clots. He said most tolerate Hydrea well. He said I'll need to get blood drawn every 3 months but he will alternate with my regular doctor, who always does lab work anyway.

I've always been healthy and this new medical issue is a bit unsettling, but I'm trusting the Lord to get me through it. I know I'm very blessed to not have this issue at a younger age. I have to go back to him in Sept.

I've already found this forum to be helpful and reassuring, but I would like to join an active discussion. Best wishes and thanks to all.

J. (cec2)

Hello, I see you're taking both Nattokinase and aspirin. I just started on my journey being diagnosed with ET & Jak 2 positive. I was taking 2 NK for 4 months - overall good health. Now I was told by my specialist to take baby aspirin and I've been taking it for the past month. Reading online it suggests not to take both. I'm just concerned for extra bleeding or thinning of the blood. I Plus the docs told me to stop the NK.
May I ask how long have you been taking both? I also take Curcumin, Bromelain and Resveratrol along with NAC. I'm hoping the platelet numbers go down and don't have to go on HU as he already suggested. I declined presently.

Look forward to any help.
Thank you

@ettap
Have you had a bone marrow biopsy? I understand the labs and the bone marrow biopsy to diagnose?

Yes, but I itch random times of the day. It’s really frustrating. I find antihistamines help but don’t stop it all. I haven’t found any creams that work. Like you, searching for an answer.