JAK2 Mutation - Effects and Questions

Just because you have the JAK2 mutation it doesn't mean you cannot have other gene mutations. I suggest you get the none marrow aspiration, biopsy and molecular panel done. Knowledge is power. Once you're properly diagnosed your oncologist will know how to treat you.

I am in agreement.

Look online for facts about high platelets (ET). The doctors use this general rule of thumb: patients under 60 (& "low risk," meaning not other problems or malfunctions), take 1 aspirin. Over 60 (& if scores are high consistently, & esp. if you have other issues) need more meds. I take 500 mg Hydroxyurea daily (was 5 days for first 2 years), exercise, sleep more than I used to!), eat well, and focus on wellness. I am 67 and get more tired but that's probably age too:-) Not sure now if I should travel this April with coronavirus and a stop in London & JFK airports....but there are cases here on West Coast too....

I assume that all if us who have blood cancers have immune deficiencies so traveling to any area that has active outbreaks of the coronavirus isn't a good idea. As I understand it, older people with underlying health issues are the people who are most likely to succumb to the coronavirus or the Type B flu if not inoculated. Of course traveling on a plane places you in close quarters with other passengers and increases the likelihood if exposure to all kinds of nasty things. We're scheduled to go to Northern Italy in late June. Not sure if that trip will be canceled but it doesn't look good at the moment.

I have just been diagnosed, ET with JAK2 mutation....he wants me to start on Hydrea...it is reassuring that you are not having major side effect issues with it....I already have several symptoms of the disease and can't figure out why i would be taking a medicine that will not help get rid of the symptoms, but could increase them??? very confusing.....

Hello, was diagnosed with PV due to very high platelet count that led to 2 mild strokes. Am very healthy person overall and surprised that I had 2 mild strokes which lead to PV diagnosis. My main issues were extreme fatigue and an itchy back. Am now doing fine taking1 hydreau pill day and platelets in normal range. Did anyone else have a stroke as a result of undiagnosed high platelet count?

I was diagnosed with Jak2 in 2019 and have been taking the hydra drug and I experience several side effects. Mouth ulcers, skin sores and irritations. Place me on antiviral meds to try to help prevent but still get these. I am experiencing extreme burning in my toes that is worsening. Is there anyone out there who has Experienced the burning in the toes or feet and what has been used to treat it?

Hi @nolan, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about the JAK2 (Janus kinase 2) gene mutation. I did this so you can connect with other members like @wa34937 @mjpm2406 @godschild56 @barbie75 and others.

Alterations in the JAK2 gene can cause conditions such as Crohn disease, essential thrombocythemia, polycythemia vera, primary myelofibrosis and others.

You mention that you've been prescribed hydroxyurea (Hydrea), which can cause the side effects that you describe like burning in hands and feet; leg wounds or ulcers; pain, itching, redness, swelling, or blisters on the skin; and mouth ulcers. Nolan, have you been diagnosed with essential thrombocythemia (ET) or polycythemia vera?

I have had ET and taken hydrea for nearly 30 years now. I am currently 66 and found out somewhere along the way that I also have the JAK2 mutation. Very few people I've known throughout my lifetime even know I have this condition, as I choose to take my meds, get quarterly CBCs, consult with my hematologist and live life as fully as possible! No worries! Take courage, everyone! There are WAY worse things than this in life 🙂 I rarely even think about it!

I have JAK2+ ET and I've never had side effects from Hydrea in the 30 years I've taken it. It has only improved my health, so don't assume it will make you feel worse. For me, it only made me feel better!