Is there any connection between Jakafi and eodema of the ankles thighs and mostly abdomen? I understand there can be weight gain associated with Jakafi,but thought it was an increase in appetite and reduced spleen size that was responsible. Neither is applicable in my wife's case, just water retention really. She has noticed her heart rate has slowed by about 20% since starting Jakafi in September and quite a bit of lower back pain, possibly emanating from her pelvis and femurs. Which I read maybe inflammation of her bone marrow. We spoke with her MPN expert a couple of days ago, who is arranging a scan. There are other things it may be ranging from her liver to her only kidney or heart. Any experience of any of the above could be helpful. Thank you all.
Jakafi and eodema of ankles thighs and abdomen - MPN Voice
Jakafi and eodema of ankles thighs and abdomen
Jakafi can cause edema and water retention. It can also cause GI issues such as diarrhea or constipation. It would be important to pay particular attention to renal function. It sounds like the MPN doc is already on this.
Please let us know what she discovers and how she gets on. All the best to you both.
Thank you hunter, we were glad the professor rang us as he had arranged to. Her hematologist at our local hospital has been replaced three times in the past year, the latest of which suggested it had nothing to do with the MF or the drugs she's on and to see her GP! Which won't be happening anytime soon as they know so little it's a waste of time seeing them. The professor is arranging the scan and to see her in clinic at Manchester Christie's. Her creatinine has been getting better recently, though we haven't the latest figures, but will phone the nurses for them if they were done last week.
Your wife is lucky to have you fighting for the best treatment for her. Hope she can get something sorted out to improve things.
Thank goodness you have a competent MPN provider involved. You and your wife demonstrate why it is so important to not accept inadequate care. Hope it all get sorted quickly
Yes ,I take Jakavi ,4 yrs now for M F .My ankles swell ,my feet & toes I have had scans etc neither my blood consultant or cardiologist are concerned re the swelling as long as it goes down ,which it does,still can’t work out if it’s too much exercise or not enough,uncomfortable tho & a no no for certain shoes & boots.Your wife will understand that feminine grumble,hope she gets it sorted & like mine ,not a major problem ,just another odd thing with our M P N.Best to you both,like you my hubby worries & it’s hard for him now as I cannot do what I used to do.Just keep strong 🥰 we have to cope .
I too take Jakavi as I have MF. I have problems with oedema in my calves and stomach. It does come and go. I am unable to exercise as I have Afib but I do walk around as much as possible. I eat very little as food is not very important to me and have still gained the inevitable weight. I don’t eat sugar or heavy carbs but still get oedema.
I am going to see my specialist on Tuesday and will mention it again but she seemed unconcerned last time I brought it up. As Hunter says, it is sometimes a side effect of Jakavi. If you do come up with some answers, please let me know.
Katie
My wife was on Anagrelide for nearly six years, which she reckons messed with her heartbeat, but since she's been on Jakafi it's been regular but a touch slower, she also is slim . Had the scan appointment in the post today so will have an MRI on her full spine and pelvis and hips with contrast. We wonder if they'll be checking out her liver and pancreas too as last year they found what they described as a possible new spleen growing and a lesion on her liver, which is weird. Should find out towards the end of February what the score is.
Jakafi and H/H PCV 
Besremi, Pegasys and Jakafi adverse event question?
jakafi and Pegasys combination for Myelofibrosis
combo Jakafi and Pegasys
Polycythemia and Jakafi
