Weight loss in PV?

[sbs_patient]

I'd like to know if anyone else with PV has been experiencing weight loss. I was diagnosed back in 2015 and treated, first with phlebotomies, then with HU, and finally, since August 2022, with Rux. For the past five years or so, I've experienced noticeable weight loss. In the first years after diagnosis, my weight was about 170 lb; about five years ago, I noticed a steady decline to something like 165 lb. My weight remained stable for some time, but recently it's started to decline again, to 162 lb. This amounts to a 5% loss of body weight since diagnosis. I know that Rux is supposed to cause weight gain but I haven't seen this. I also understand that weight loss is a symptom of PV and am curious as to whether others have observed this. I've also noticed that night sweats have returned, though much milder than before I started Rux.

Last week, my MPN specialist told me that she would like to increase my Rux dose from 10 mg AM to 10 mg AM plus 5 mg PM. Note that my initial dose of Rux (10 mg twice a day) caused anemia. My MPN specialist said that if happened again I could switch to momelotinib.

Any thoughts or suggestions?

Steve

[Anouchka]

My weight loss was drastic until I was diagnosed for PV. Am on rux and only gained 5kg and remain stable but watch my diet. Not sure any of this will help you figure out your own weight loss, but hope you find the cause and continue to be well.

[sbs_patient in reply to Anouchka]

Thanks for your comments and wishes. I think it makes sense to increase the dose of Rux just a bit and see what happens. I may have to split pills to experiment with 2.5 mg increments.

[Anouchka in reply to sbs_patient]

For info, I take rux 20 mg AM and 10mg PM and my haematologist is happy with the stability of my bloods and platelets…

[ainslie]

I am not sure re the weight issue especially now you are on Rux. It’s probably wise to try to check other reasons for the weight loss.You mentioned your doc is suggesting 10+5 because 10+10 caused anemia, you can also split the 5’s to give 10+2.5 if necessary. Personally I like to keep am and pm dose the same so at one point I was on 7.5+7.5.

[sbs_patient in reply to ainslie]

My guess is that 10 mg of Rux isn't quite enough to deal with my PV symptoms, and I'm hoping that increasing the dose somewhat will help, keeping an eye on anemia.

Splitting pills makes sens to mee, either 7.5 + 7.5 or 10 + 2.5.I'll have to experiment to see what works best for me.

[Ovidess]

I'm on Besremi for PV, not Rux, but did find some weight loss which was easily explainable because for a while I experienced fullness that led me to eat less, especially at a sit down meal. That was distressing. Since then my blood numbers stabilized in a good zone and I gained that weight back for the most part. Just my experience...

[gjh8733]

I dropped from 172 to 160 over 2-3 yrs following diagnosis of PV and treatment that went from phlebotomy to Hydrea to Besremi

I switched to Jakafi about 3 mts ago and weight has increased by about 5 lbs. energy levels however are much improved so am willing to try and control diet to keep weight stable

Can you tell me how quickly did you become anemic on Jakafi. I ask as in the 3 mts I have been I it my hematocrit has dropped from 43% to 39%. I would prefer not to become clinically anemic so would be interesting how quickly it occurred for you and did the decrease in dosage help quickly

Thanks!

[sbs_patient in reply to gjh8733]

Your weight loss experience is similar to mine, though it's continued under Jakafi.

My anemia came on soon after I started taking Jakafi (initial dose 10 mg twice a day). As my MPN specialist reduced the dose over the next six weeks or so, the anemia moderated, and my HGB has been stable in the 12.5-13 range for quite some time now. Hematocrit is also stable, at about 39%.