hello everyone. i was diagnosed in sept. with myelofibrosis and am jak2 positive. i am 49. i have been having some pretty wicked headaches and was wondering what would be the best remedy. i have been on jakafi for 4 weeks and it has helped my bone pain tremendously and am less fatigued. i have gone through a lot of emotions with the diagnosis but now just trying to get educated. it's nice to have a forum to voice fears. any information about this condition would be helpful.
i have been seeing a hematologist that i do not like, so i am getting an mpn specialist next month. the jakafi reduced my platelets and white blood cells to a normal number when they were extremely high.
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runnerbird71
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My name is Steve from Sydney, Australia. I have Post ET / MF, CALR+ Type2 & ASXL1+
I have been on Ruxolitinib for almost 4 years now I believe, and like yourself have generally found some positive relief of some of the MF symptom burden...
However, as far as my headaches have been concerned, generally... They were possibly experienced concurrent to a higher than normal Platelet level, and or the event was around the same time as my dosage titration... (?)
(Ruxolitinib users can experience Ruxolitinib Withdrawal Syndrome - RWS)
I have also had two (2) TIAs, (Transient Ischemic Attacks ~ minor brain strokes), where headaches are also common, as too was/is Tinnitus...
Hence, and just to remain on the safe side, if I were you I would see my GP, and run a few tests, just to be sure that there is nothing else going on etc...
Hey. What were the attacks like? I think I had one the other day. I was talking to a friend and I became confused between past and present. Went to ER had some cat scans done and showed no clots. I am getting scheduled for MRI. I am having headaches every day now. The episode really freaked me out. It is so hard to know what to do with this cancer. Some days I want to throw my meds in the garbage and go smoke pot or something. I don’t smoke now but I wonder what the answer to all this is.
Unfortunately, I believe that we might just all have to learn how to manage our new MPN Club lives w/ more patience for ourselves & for others who simply may not understand what we are going through...
However, it really does not have to stop us from trying to continue to challenge ourselves...
As you may have read somewheres here & there... (?) I have just returned from a c. 600km cycle over 5 Days, & while I am still recovering w/ aches & pains all over, I am so glad that I made myself do it all the same...
Hi, rumnerbird,When I was first diagnosed with ET Jak 2 at age 52, it was because I went to see my GP because of recurrent headaches. He did some bloodwork and platelets were about 600. He referred me to a hematologist and after he put me on hydroxyurea, my headaches disappeared.
It’s good that your changing to an mpn specialist. After 10 years with my original hematologist, I switched to an MPN specialist and she diagnosed me with post ET MF.
Good luck in finding answers and I hope you feel better soon.
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All about me and my Myelofibrosis
Myelofibrosis and nausea
Rux or Interferon?
Tapering off Jakafi
Myelofibrosis - changing dose of rux and epo helps the fatigue
