Anyone living with Essential Thrombocythemia with JAK2?

@jodyjazz I am 79 and have been on 500mg daily and yes it makes you tired and I am a very high energy person normally! I skipped taking it several days here and there last month and my count shot up from the 500’s to 760 so I am trying not to miss a day.

My doctor is monitoring my platelet count, I am 63 and my platelet count is going up between 5-50k every 6 months, I am now at 700.
I have CALR varient and a TET2 finding. JAK2 is normal.

My doctor says that she will start getting concerned about my platelet count once I approach 1000. In the meantime, the only med I am on is a baby asprin 1x per day.
The Diagnosis right now is essential thrombocythemia. and we are monitoring without any specific intervention

@ctmci, did you take your first dose? How are you doing?

@colleenyoung I started a week and a half ago. I only take 500 mg every other day. I have had no side effects so far thankfully. 🙂

Hello,
I started taking Hydrea 2 months ago (500 mg. Once a day/3x a week) and had to stop three weeks ago because I started getting small non-itchy white bumps on half of my lower arms and half of my upper legs. Has anyone ever experienced a bad rash with Hydrea?

Hi @liztaq Welcome to Connect. I’m sorry to hear you’ve developed a rash while taking hydroxyurea. There are other members who have talked about similar experiences. Here’s a current discussion from @pendlebear discussion a rash and other members joining the conversation.
Developed Rash on Hydroxyurea (HU
https://connect.mayoclinic.org/discussion/developed-rash-on-hu/
Has the rash disappeared now that you’ve been off the HU for several weeks? Has your doctor discussed an alternative medication to treat your ET (essential thrombocythemia)?

@loribmt
Hi Lori,
Thanks for following up with the link above! Yes, my rash has improved significantly ever since I stopped taking Hydra. I’m wondering if my hematologist will allow me to try Hydra one more time before she gives me the next medicine (Jakafi). I heard the results from Jakafi are not that great…

Hi @liztaq. This will be a good conversation to have with your hematologist about whether to continue with the hydroxyurea (HU) or switch to another treatment. The good news is the rash disappeared with being off the Hydra for a few weeks. A telling experiment would be to start the medication again to see if the rash returns.

Since you’re new to the forum I’d like to help you meet some of the other members who also have ET. We have a pretty lively group who have shared their experiences over the years with various medications such as Hydroxyurea (HU, Jakafi, Anagrelide and recently Besremi has been added to the lineup.
I did a quick search for links to get you started. Here are the results for the search for Jakafi and ET. Read through the list and don’t hesitate to jump into any conversation!
https://connect.mayoclinic.org/search/
During the time you were taking HU did you see improvements in your platelet levels?

I find this disease blood cancer MPN Jak 2, rather one of the strangest, oddest, with very little that is the same from person to person, side effects vary greatly, Why has blood cancer been left it seems to be the last to find cures or a better way to repair fix the blood... old medication are not the long term answer, i have gone from 1.2 million now at 574 so my doctor is happy but i would rather be normal. And the HU drug, has robbed me of most my muscles dispite staying active and trying to continue my very physical day, i not a couch potato, i enjoy working my 2.5 acres with 200 trees, 50 roses (which need to be cut back) and many other things.. i have a new german shepherd puppy 4 month, he keep me going without him i think i would sell all and just go sit in a travel trailer some where.. The doctor don't seem to have much but trial and error, and i'm allergic to so much and also have had a MH Crisis in surgery and died, and was placed into a coma, after that is when i my went crazy. went up every year for several until i caught it Platelet, as i kept having unexplained problems after a hernia surgery and tummy wrap.. But i am thankful that i have this kind for now, as i know many whom are throwing up all day and are so sick they can't do anything.. For now i'm ok with this, but i want to know how do i rebuild my muscle so i can continue the best i can.

@liztaq Fred Hutch Cancer in Seattle said if your Jak 2 and need platelets lowered the recommend Jakafi, and when i told them how active i was and how allergic and how my system over reacts to most all medications, They still said it would be the best for me.. My Puyallup doctor have me on HU.. but i have had a lot of side effects from it.. So i think any thing you put in your body that isn't suppose to be there causes a problems and we are each very different with that experience.. So i don't know which is better, i guess one just has to try.. I don't like HU but Jakifi if you have ever had blood clots, can be a negitive for you, but we all have to weight the risk vs reward.. We really need a lot of data on these drugs..Hope you can find that happy medium, and feel some better..