Sometimes feel good and sometimes not

[Cookiebaker]

I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy? I don’t know if it from hydroxyurea or from ET. I enjoy everyone’s sharing their experiences on this web site . Thank you.

[Helena303]

I was Jak2 and have et. I started on 500 but now on 1000.

[Ebot]

Yep, good days, not so good days. Thanks to Hydroxy much better than it used to be - mostly a bit rubbish and occasionally OK!! The time around diagnosis can be incredibly stressful. This can mess with your head and exacerbate feelings of fatigue etc. Hope you have some more answers soon and get yourself onto an even keel. All the best.

[Wyebird]

Yes I have good days and bad. I lay in bed and say to my self I feel good. I’m going to do this this and this and then 10 mins later drained.- save your energy for good things.

Can’t understAnd why you just weren’t tested for mutated genes. I was. I’m ET- Calr.

[Cookiebaker]

I have been tested for both CALR and MLP just don’t have the results yet . Should find out next week.

[Hidden]

Hi

I was under the understanding you need a bone marrow bx to diagnose ET? maybe I am wrong? Why would you be started on Hydrox without a diagnosis? Just wondering!

Lyn

[Cookiebaker in reply to Hidden]

Hi , I have had high platelets for a few years . Recently they rose to nearly a million. The hematologist wanted to do the blood mutations first and did The Jak2 mutation first . He said I was high risk for clots so started me on the Hydroxy. After two weeks on the med, the platelets dropped to 830,000 . You probably know more than I do about when Bone Marrow biopsy needs to be done . He said he would wait until mutation results before doing a biopsy.

[Hidden in reply to Cookiebaker]

Yes fair enough, I actually can't remember which test I had done first. I was diagnosed in 2015 by a random blood test. my platelets were 770. I turned out to be CALR. My platelets are now sitting between 600 and 700 so no need for Hydrox or such till over 1.5 mil. Oh and I am 67!