JAK2 positive, high platelets and also PAH (diagnosed)

Posted by bevjg @bevjg, May 10, 2023

Does anyone have both of these incurable diseases? How do you manage therapies for both? I'm an active 83 year old female.

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anglis | @anglis | May 10, 2023

I’m currently being tested for polythecemia vera. JAK2 at the end of May. A bit anxious.

How are you coping, dear?

bevjg | @bevjg | May 10, 2023

Pretty well. I’m just starting on the medication for the PAH so will have to see how that goes. The thing that has been most frustrating, with both diseases, is that it took several years with both to get a diagnosis. Primary care doctors just do not have the training and experience to recognize symptoms as something serious and possibly life threatening.

Colleen Young, Connect Director | @colleenyoung | May 14, 2023

In reply to @bevjg "Pretty well. I’m just starting on the medication for the PAH so will have to see..." + (show)

@bevjg, with PAH are you referring to pulmonary arterial hypertension?

bevjg | @bevjg | May 14, 2023

Yes.

wvalleygirl | @wvalleygirl | May 14, 2023

My very active 82 year old father just got diagnosed with JAK2 positive, high white count and myeloproliferate disorder. He will start taking Hydrea 500mg 3 times a week. Is there anything is should look out for? Anyone with some good advice on these disorders would be very appreciated. Thank you

bevjg | @bevjg | May 14, 2023

In reply to @wvalleygirl "My very active 82 year old father just got diagnosed with JAK2 positive, high white count..." + (show)

I'm a very active 83 year old female JAK2 positive, essential thrombocythemia, on Hydrea 500 mg, 7 days per week. In addition I have pulmonary arterial hypertension and take several strong meds for that. The only side effect I noticed from Hydrea is fatigue so I just have to pace myself and get plenty of rest.

leene808 | @leene808 | Dec 3 8:50pm

Yes! I have just been diagnosed with Pulmonary Arterial Hypertension, and I am guessing that its caused by the E.T.. I have appt with my MD tomorrow so I will ask him what the Heck is going on! nobody warned me about this development. I am so let down and depressed about another disease to deal with now. Something about the mini clotting that may occur in the Pulmonary Artery over time with ET that makes this vessel "thicker" and narrows the vessel which increase the pressure in this artery that leads from the heart and goes to the lungs to get your blood oxygenated. My symptoms have been Chest Pain, Shortness of breath and FATIGUE. I have had this for 6 months. and my hematologist has said and done nothing. I had to go to a cardiologist to find out why I felt like I was having a heart attack. I am so mad at this blood disorder, and feel victimized by the outcomes. I just started on Besremi injections, and I am not sure that those will continue now that I have this new issue. Hope you are doing better! Leene

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