Weight gain on Ruxolitinib

[Patchworklife]

I’ve been taking ruxolitinib (40 mg each day) for 7 months since PV progressed to MF. I have more UTIs and weight gain. I wonder if other people experience these problems and how they can be overcome?

[Lab-Rat]

Hi

I dropped 12 kg since MPN diagnosis, but gained back 4 kg on Jakavi (been on it for 8 months for prePMF grade 1 fibrosis) in spite of daily intermittent fasting (I have one meal every 24h). I'm tapering off Jakavi at the moment and going back on Pegasys. Jakavi is causing too many side effects: gastritis, oesophagitis, sore tongue, sore throat, bladder irritation (not UTI), plus it is not controlling my platelets and red blood cell count did not bounce back up when it dropped after starting Jakavi.

[Patchworklife in reply to Lab-Rat]

Thank you for your prompt reply Lab-rat. I'm sorry you have so many side effects.

[tracey13 in reply to Lab-Rat]

My husband's bloods are all in range on jakafi, but weight gain is noticeable now.

He takes 2 hydroxy a week and 20mg twice a day of jakafi.

He's waiting for a spleen scan we hoping his spleen has reduced back down. As it was 22cm last October.

He's got post PV mf stage 1/2 .

He's been to see the sct team but he's not keen on this at all or less he's faced with no choice and he progresses to AML .

[ccsial]

I am on JAKAI for MF also. I take 20mg twice a day for 10 months now. No side effects so far. I used to weight 160lbs (73kg) and now I am at 177lbs (80kg). I seem to have stabilized now at 177lbs.

[Inca]

Hi Patchworklife

I have been on Rux 9 months,and yes. I have gained weight.Unusual for me I have been slim all my life,now I am spreading around the middle!! Don't eat much,mostly salads and I am reasonably active depending how well I feel.

Definitely the Rux,will question my consultant next week ?.

Best to you.

[Patchworklife in reply to Inca]

Thank you Inca. I’ll talk to my consultant tomorrow and let you know what he suggests.

[Inca]

Thank you, I really would like to know what your consultant says,

Mine is French,I am treated here in Fr. Thre are many differences here from U K in treatments .Not grumbling. My care is excellent.Good Luck with your rendezvous.Sally

[MCW22]

I've only been on it for 2 weeks 10mg twice a day so too early to see any weight gain, but did have dizziness for the first few days. No other side effects so far and won't know how it's affecting my blood numbers until my next appointment in October. Pv Jak2 + with some fibrosis but not enough to class as mf.

Carol.

[skipperL]

I have put on half a stone since going on Ruxo which is depressing - the main problem is that I have an enormous appetite now - whether this is due to the medication or to the fact that I’m feeling so much better I don’t know! No side effects from the meds so far....

All the best SkipperL

[Leighcox85]

I have primary mf jak 2 positive I have been on rux for 2 years my consultant did say it does cause weight gain and uti s its a common side effect it can always cause skin cancers so it’s imortant to wear sunblock always and check skin for marks when you’ve been on a while it causes severe skin rashes to unfortunately it comes with taking the drug but always speak to your consultant if you have concerns

[Cja1956]

I’ve definitely experienced weight gain while on Ruxolitinib. My appetite has increased quite a bit. I was underweight before so it hasn’t been a big problem yet, I’m trying not to gain any more, though.

[kimberlypurbrick]

I've been on Ruxolitinib for over a year 20mg twice daily. Gained almost 20lbs. Dr says the medication makes the metabolism more efficient. Says to be more active but difficult when so tired every day.

[Buggerbear in reply to kimberlypurbrick]

I have also been on Jakavi over a year, now taking 20 mg twice a day. My weight has increased over 20 pounds and I have never been heavy in my life. How do you lose weight when you are tired every day and also having breathing problems?? I feel your pain kimberlypurbrick!!

[Sheppard48]

I have been on Jakavi for MF for about 1 year now and have gained about 15 lbs even considering I have been doing Keto and lost about 25 lbs only to gain 15 lbs back. Also just recently dealt with UTI. I have not had a bladder infection for probably 30 years, so this was a surprise. Dr. did suggest probable weight gain, but nothing regarding bladder infection. Have not had any other side effects on Jakavi.

[smokeycat]

I was diagnosed with myelofibrosis in 2006 Dr here in my city had me taking Hydroxy until 2008 .I read about a trial that research MPN in Houston Texas,called got an appointment with MPN research Dr to be in the trial for jakafi 2008 phase 2 . I would fly to Houston every 3 months for test 2 days. I had labs done here in my city hospital every month fax them to Dr in Texas.

I had no problems felt great,but gained from 117 -140 lbs .my normal weight was 125.

When I went for my schedule visit in January of 2012 for test in Houston the FDA had approved jakafi in November or December 2011.

I haven’t been back to Houston,Texas since.

I was taking 20 mg twice a day from 2008-2017 my rbc

Was 7 had to get 2 units of blood every month for 4 month oncologist lowered my jakafi to 10 mg twice daily

Which has kept my labs at 9.7.

I feel great but spleen enlarged again not causing pain as

It did before the trial. I have lost my weight back to 120 now.

Good luck to you hope all is well

[ProudHarry in reply to smokeycat]

Could you please tell me how you lost the weight from taking ruxolitinib?

[tracey13]

My husband started ruxolitanib in February he's gained over 14lb .

He's trying hard to lose weight but it's a struggle for him.

[Patchworklife]

Thank you to everyone for kindly replying to my ‘weight gain after taking Ruxolitinib ‘ question. I apologise for not responding earlier but I’ve developed cataracts - one is a rare Christmas tree cataract! and I find it hard to type. My consultant has reduced the dose of Rux from 40 a day to 30 and thinks that will slow the weight gain. I’m aware that my appetite has dropped which is a relief.

My latest blood test showed that I’m anaemic which explains why I’ve become breathless since my last test 2 months ago. Hopefully the lower dose of Rux will help.

In the 8 months after starting Rux I’ve had shingles despite having had an anti-shingles vaccine 2 years ago and several UTIs and fatigue.

Reading the trials and tribulations of other PMF sufferers I know that so far I am fortunate to have so little to complain about! I salute those who are coping with far more distress and anxiety.

[ProudHarry]

Weight Gain and Ruxolitinib 2020...

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