Question for Jakafi takers.

[Peaches230]

I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on nutritional foods or products (will verify with Dr before using). Thanks!

[socrates_8]

Hey Peaches...

Nice to make your acquaintance...

Ruxolitinib, (Jakavi), does have a few issues, as reported by others along the way...

I've been on 15-25mg b/d for over 5 years now...

It does take a while to fully stabilise, (or did for me). However, it also reduced my spleen size back to normal very quickly, & I felt I could start to exercise again, so I took up cycling...

Diet plays a central role too, because Jakavi will most likely make you put on weight, as it does for most...

Another main issue some people have is antagonising skin lesions that you may have already developed while taking HU(?)

The final thing that one should be aware of is to be very careful about contracting infections of any kind. Jakavi leaves the patient highly vulnerable to infection. If you are not taking an 'Anti-Viral' as yet, you may need to. Best talk w/ your MPN specialist about this point...

Hope this helps a little...

Best wishes

Steve

[ainslie]

It’s important to remember we all respond differently, but I have been on Rux for four years currently 17.5mg BID for PV. I have had no side effects apart from a tendency to put on weight which I counteract with diet control, ie cut sugars and refined carbs plus plenty exercise. Some are at risk of increased infection but I have not had any and I know others on RUX who haven’t. I try and keep my general health and therefore immunity up by eating healthy, correct supplements and at least 30 minutes per day of puffing exercise, all of which has been shown to help immunity.

[tracey13 in reply to ainslie]

This is what happened to my husband he gained a lot of weight.Anyhow after studying foods etc he's realised he gets sugar spikes . So he's cut a lot of sugar out his diet he's lost weight and tries hard to stick to a healthy diet.

Tracey

[Sodabread]

Hi PeachesI have been on Ruxalitinib since end of November last year 10 mg in morning and 5mg in evening and have been having some stomach problems - I do have IBS but this has seemed different. Are you able to say what kind of stomach problems you had. I have MF and was on hydroxycarbanide for a number of years. Wish you well -Sodabread

[Wychwoodbabe]

HiI have been on Rux for about 6 years and am fine with it except for weight gain and wind! Both manageable and a small price for me to pay for feeling so much better. 😁

[MadMk]

Hi, Ive been on Jakafi ( 30mg tablet, twice daily for PV ) for 6 years and haven't experienced any side effects that I can be attributed to the med. I generally tire out rather quickly but that's due to the red blood cell problems associated with PV.

Hope this finds you feeling much better

[tracey13]

My husband is on 20mg twice a day of jakafi. His spleen was enlarged but it's almost back to normal size now. His bloods are all stable and he's had no side effects. He has post PV MF .

Tracey