Anyone living with Essential Thrombocythemia with JAK2?

@kat260

Thank you for sharing all this helpful information!

The more you know, the better you're prepared to take charge!

@kat260 thank you so much for your precise description of your appointment with this fabulous specialist. I am pretty relieved after knowing that this expert emphasizes the necessity of acting instantly. And from my understanding, it is exactly what I have hoped for. First of all it is so vital to reduce the platelets and HU is the only medication which is capable to do this. And after the successful process of lowering those dangerous thrombos the next step could start. And obviously, she prefers the more modern path of treatment, namely interferon. Has she already defined if she’s gonna use Pegasys or Besremi? Can’t wait to hear her recommendation. And I guess you are absolutely right to do this nasty biopsy. I guess this is the gold standard although I have to admit, I am happy that I could have avoid the procedure yet .

By the way, you kindly inquired about my ongoing treatment . Until now the side effects are pretty low. I only perceive red marks at the point where injection has been administered. However, my other blood numbers are too low and we closely observe this development, otherwise the danger of severe infections will increase. Tomorrow I am gonna have my next appointment and afterwards I know the exact numbers and how to deal with this issue. Hopefully we will be in touch to share our stories. I wish you a good start with HU, pleas have in mind that sun protection is key🏖️your Birgit

I’m an active 82, walking or hiking 3-4 miles 2-3 times a week. I was diagnosed with Et with Jak2 after about 4 yrs of tracking my platelet counts (high of 566 but usually in the high400’s) and a bone marrow biopsy. I’ve come down into the 300’s on 500 mg. HU once a day snd 81mgs of aspirin it seems to be working without any obvious side effects! I wish you well.

Hello, lindamarie! Others on this forum have been living with ET with the JAK2 driver for decades.

Diagnosis is SCARY! Especially since this is something you (and maybe even your doctor) had never heard of.

But we are lucky that we have effective treatment options. The JAK2 driver is the most frequent and the most studied form of ET.

We are lucky to have this forum, too. This is a great place to ask questions and benefit from others' experiences.

We're here for you!

I’m an active 82, walking or hiking 3-4 miles 2-3 times a week. I was diagnosed with Et with Jak2 after about 4 yrs of tracking my platelet counts (high of 566 but usually in the high400’s) and a bone marrow biopsy. I’ve come down into the 300’s on 500 mg. HU once a day snd 81mgs of aspirin it seems to be working without any obvious side effects! I wish you well.

@janemc
This is great, I'm so glad I found you. It did two things for me,
one: started taking the sun thing a bit more seriously (though I still have a glass of red wine everyday) and
two: I no longer feel alone with the HU and/or ETJAC2. When I start to describe it to my friends their eyes glaze-over. 🙂

@kc7adk54
Can you tell me more about the infusion for osteoporosis?

@gigi05 What would you like to know? It is Zolodronic Acid, IV infusion that takes about 30 minutes. It is one of those drugs that is associated with jaw fractures. I could swear my primary dr said it wasn't one of those when I started it 2 years ago. I haven't had any reactions or side effects that I was conscious of. But have realized my issues with swallowing and GERD started about the same time I started the Zolodronic.