Anyone living with Essential Thrombocythemia with JAK2?

@hipsu5 @colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..

@hipsu5

Congratulations on this wonderful news!!!!

HU can upset our GI systems. As nohrt4me advises, drink LOTS of water each day. I like yogurt's soothing effects too. You always take your capsules with food, right?

Your headaches may be from the ET itself. Have you ever sprayed lidocaine on the back of your neck? That can help. For me, HU greatly reduced the severity of my headaches. Hope that will be true for you as well.

ET may also be responsible for your congestion. Our mutated platelets are so weird that they can trigger our histamine response. With permission from my oncology nurse, I take an allergy relief pill every morning. Makes all the difference!

I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.

@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/

@jodyjazz

The congestion some of us experience is not from HU but from ET itself.

Always remember: You are almost certainly the only person with ET your physician has ever encountered, unless you are lucky enough to be in the presence of an oncologist specializing in MPNs.

Your allergist has no idea that ET's weird platelets can trigger your immune response.

It's all part of the fun of ET!!!

I have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?

@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/

@dewz13
they do mine every six months and review labs with me, yes. I reduced my dose to EOD 500 mgs and my hair stopped falling out, and did extra labs and have heard nothing back. I assure no news is good news. I'd like to blame the ET or HU on the 15 extra lbs. I'm carrying but that would be a bridge too far.

@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.