JAK2 Mutation - Effects and Questions

The other thing i am wondering is at what age where you diagnosed and what the treatments have been?? My doctor wants to take pints of blood monthly from me (which hurts and leaves my veins hurting) because medication is not an option as would have to be on it for the rest of my life. What is everyone else doing??

I am JAK-2 positive and I have not experienced back spasms, left side pains, left shoulder pain or neck pain.

I have a question and this might already have been discussed but has anyone ever had back spasms/ left side back pain, left shoulder pain and or neck pain?? I Have MS in my Brain and had pushed it off to but now i am questioning if the Jak 2 is causing it. Any suggestions or thoughts? TIA

I have a question and this might already have been discussed but has anyone ever had back spasms/ left side back pain, left shoulder pain and or neck pain?? I Have MS in my Brain and had pushed it off to but now i am questioning if the Jak 2 is causing it. Any suggestions or thoughts? TIA

I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea is toxic enough to kill the excess platelets. #2. I have experimented over the years to cut back a little from the prescribed dosage simply to minimize the amount of toxicity I'm consuming. My Docs have not liked this kind of fooling around with the dosage. So I've been steady at 6 days a week, no Sundays for about a year. No side effects from the Hydrea after the initial first month twenty years ago. #3. I still have no symptoms of this strange blood disorder called ET, regardless what my count is on any given day. I go every 3 months for a cbc. It puzzles me that at 72, I still feel the same with a count of 480 as I did at age 40 when I was diagnosed with a count of 800. #4. My two Docs (first one retired) have dangled the ultimate fear over me since the diagnosis, but so far my ET has not morphed into leukemia. Having no symptoms and in disbelief, I went to the Scottsdale Mayo Clinic for a second opinion at some point in the 1990s. Same diagnosis. Very disappointing because I was really convinced that nothing was wrong with me. Thanks for sharing the NIH info. I always like to run across updated information on PV,ET, and other blood disorders. You may never progress to anything more advanced. Best wishes.

You may find that despite having the JAK2 mutation, your life may not be any noticeably different. I'm now on three years with a diagnosis of polycythemia vera and other than monthly blood lab work and regular phlebotomies, my life has remained relatively unchanged. I'm still very active -- I am still able to work as a soccer referee. You can go for decades managing the condition without having any significant changes in your health and the way you feel. Support your overall general health by eating well, getting exercise, and simply taking care of yourself.

Thanks for the article. It was useful. It seems to me when discussions get moved, they are just buried in old discussions, so I'm not sure this will not get any replies other than that of the moderator. But, I appreciate the article you did send. It is very useful, and along with some other internet research, indicates that it is possible to test positive for the mutation without having overt disease. Given my consistently high WBC counts, I'm going to *guess* that the mutation has already had some effect, but will have to wait for a bone marrow biopsy to be certain. And, my allele burden is significantly above the cut off typically given for "mutation in healthy individuals" ...although my testing was done in purified granulocytes, while the articles report testing in whole blood, so I'm not certain if the numbers can be meaningfully compared. Ugh! I have just enough information to be worry over the holidays, without enough information to have any sort of a plan.