Jak 2positive MPN treatment Ruxolitinib - MPN Voice

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Jak 2positive MPN treatment Ruxolitinib

waddles22 profile image
5 Replies

My husband was diagnosed as above 3years ago and started Ruxolitinib 15mg twice a day 30 months ago. Has anyone with same illness experienced any lack of concentration and possibly slight memory problems. He had no problems until he started treatment on Ruxolitinib.. other than this his treatment has been really successful. He has had 3 skin cancers from head and shoulder removed successfully He says he could never go back to how he was 3 years ago. Ruxolitinib was a answer to a prayer

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waddles22
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Osteomyelio profile image
Osteomyelio

Very interesting. Thank you for sharing. You mentioned Rux has helped him so much- how does he feel? How has it helped him?

waddles22 profile image
waddles22 in reply to Osteomyelio

Before taking Ruxo he had severe itching all over his body which happened if in contact with water whether from showering or swimming or even been caught in rain. He had severe night sweats made itching worse because of sweat!! Spleen was enlarged and bone and muscle aches and usual blood problems. Since Ruxo it genuinely has made a difference. He can shower with practically no problems. Itching happens rarely blood levels etc are under control. He is virtually back too normal very active and gets on with life

Leighcox85 profile image
Leighcox85

I have primary mf and I take rux 20 twice a day for the last 3 years and yes it’s absolutely a side effect of the drug you forget things it sometimes feels like in one ear out the other and confusion is also common but it’s a small price to pay I do keep lists to help me remember but I forget about the list so as of yet I haven’t worked it out skin cancer unfortunately is another side effect but with rux the disease would progress hope this helps a little

Arknj profile image
Arknj

Hi. Yes. I have noticed that with my husband . He sometimes forgets what a simple word means. He has primary myelofibrosis and has been on Ruxolitinib since May of last year. He's going in for a stem cell transplant on 8/1/2020. He also said Ruxolitinib has made a massive difference to him and would hate to go back to the way he was.

Cja1956 profile image
Cja1956

Which MPN does he have? I was diagnosed with ET in 2008 which has now progressed to MF. Over the years, my previous hematologist had me on hu, anagrelide, and Ruxolitinib at different times and dosages. My brain fog , fatigue, and dizziness were always a problem but I felt the least side effects with Ruxo. My symptom burden was greatly improved for a while. Sometimes, it’s hard to tell whether the medications or the illness is affecting his memory and concentration.

Good luck to you both.

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