Anyone have both ET JAK2 with hereditary hemochromatosis?

Posted by jfranz60 @jfranz60, Feb 27 7:56pm

Any one managing Thrombocythemia Jak2 and hemochromatosis (cys282Tyr)? I’m new to both. I started Hydrea a few weeks ago. Any insights to share? Thanks!

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Colleen Young, Connect Director | @colleenyoung | Mar 13 5:37pm

@jfranz60, how are you doing on Hydrea?

jfranz60 | @jfranz60 | Mar 24 10:33am

Hello
All is going well with Hydrea. I started taking it about 6 weeks ago and platelets have dropped from 850 to 448! And I’m feeling better… not as tired. WBC and RBC have also dropped and are now just below normal. I also have hereditary Hemochromatosis which hasn’t really been addressed yet… and ferritin is continuing to rise. I see Dr next week so we will see what’s next. Take care!

phorowitz111 | @phorowitz111 | Mar 25 9:29am

In reply to @jfranz60 "Hello All is going well with Hydrea. I started taking it about 6 weeks ago and..." + (show)

@jfranz60
What dose are you on and any side effects?
Thanks

jfranz60 | @jfranz60 | Mar 25 10:27am

I take 500mg once a day. I was very tired and had mild headaches the first 4 weeks. But I’m not sure if it was from Hydrea or just the high platelets. The last 2 weeks I feel great and of course I now know that my platelets numbers are much lower. I assume that’s why I feel better. Take care!

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