Weight gain with ruxolitinib

[soomoo]

Hi can anyone help please?

I've been on ruxolitinib since November and my weight is creeping up. I have always eaten well and exercise alot but this change is getting me down. If anyone has any advice I'd really appreciate it, thanks all x

[Inca]

Yes me,Rux for 2 yrs + ,I have put weight around the middle.....really I am slim,always been active,still active tho not horse active as all of my life,find it so annoying that clothes are tight!!!!Legs ,arms,skinny as always,my consultant just finds it amusing,I don't.What do we do???I weigh 50 kilo .My two German Shepherd dogs each weigh more than me,so I am not overweight really,just the annoying middle bit.Perhaps we should invest in a Victorian Corset.

[soomoo in reply to Inca]

Thanks for reply. I too am naturally slim and exercise as much as I can. I've been on hydra, anagrelide but since starting rux last Nov it's creeping up the weight. I'm still on 12 tabs weekly of hydrea as well as 25mg of rux daily. It's getting me down but my husband says he'd rather me be controlled well. But me being me I want it all! I expect hrt and the menopause don't help either.

[Inca in reply to soomoo]

Oh wow Soomoo,That sounds like a lot of medication.I was on Hydrea for 9 yrs then it began to lose its efficacy & I became very ill.I have Meds for heart as when I was diagnosed with P V an artery was blocked with the thick blood then a stent fitted.The other thing I notice with Rux is that I get breathless often.I do have asthma which has always been well controlled,my life has been breeding Competition Horses,so never a problem to me...Iam long past menopausal probs,never actually had any.Making up for that now with P V I think.I understand how you are feeling down,I do too,was proud of my slim fit figure,now I am unpicking waist bands to get into favourite clothes.Try to keep strong,we have to live with this disease.Best to you.Sally

[DJK12 in reply to Inca]

I appreciate this is a post about rux and weight gain but could I ask what your consultant says about the breathlessness? I've been on rux for over three years but for the last six months have got progressively more breathless. So much so that during a recent respiratory problem leading to a night in hospital and three different antibiotics they initially thought I was having a heart attack - afterwards the haematologist ordered more heart tests but it is fine but the breathlessness continues - have to sit down after having a shower and perpetually stop start doing any housework or gardening. Having a phone consultation in a month when I think the dose might go up so will discuss it again but would interested in what you've been told. I haven't had the weight gain problem, but rather the anaemia side effect which didn't stabilise leading to EPO injections.

[Cja1956 in reply to DJK12]

Breathlessness is also a symptom of mpns. I’ve been experiencing shortness of breath since the beginning. Some days are better than others. I often have to sit down for no reason because my heart starts beating fast and I feel sometimes like I’m going to pass out. So I understand what you are going through. But it has gotten a little better with exercise and at the beginning of this year, I was diagnosed with sleep apnea. Using the CPAP machine seemed to help for a while, except I was having great difficulty getting used to the mask. I just moved to a new place and I haven’t used it in over 2 weeks, and I feel my shortness of breath is getting worse again. I hope you find some relief soon.

[DJK12 in reply to Cja1956]

Yes I've always thought the breathlessness was a side effect, but before I could deal with it and only close family realised there was a problem - obviously it was always worse when the anaemia was bad. Now even with EPO getting it to 10 (100) I think carefully about walks i.e. suitable walls to sit on if necessary and in the garden just stop and do deep breathing and hope neighbours won't stop to chat! Thankfully a new consultant, sadly only a locum, has taken it more seriously and paused venesections to get ferritin levels down - the yo-yoing of hb was just making everything worse. It's on the rux side effects list so I guess it isn't helping.Weightgain/breathlessness/anaemia/tummy problems - whichever we have does not make life easy especially if it is the drug exacerbating it.

[Cja1956 in reply to DJK12]

Yes, I agree. Having anemia definitely affects your ability to breathe. That’s when I first noticed I was getting worse when I was taking walks with my partner and I could barely walk a quarter of a mile without having to stop and catch my breath. The side effects of this disease along with the medications that we take for it don’t make life easy.

[Inca in reply to DJK12]

Wish I could.I see my consultant September,but I did ask my very knowledgeable long time GP re the breathlessness,as like you just recently it has become much worse.Yes ,I too must stop what I am doing to get relief.I have a Dyson air purifier next to my bed which helps during the night. My G P has referred me to my cardiologist,I had a stent fitted when first diagnosed with P V,normally I am checked each year but my fault I didn't keep up the last two R Vs as I had two major surgery ops for carcinoma on eye lid ,just felt so poorly didn't want more hospital .So G P is not really concerned re heart ,rather thinks that the Rux,plus my cardio Meds,plus the very hot humid weather we are having here S W France plusI am getting older & do too much......!!!!!!considering the P V etc for long time.I will tho ask my blood consultant,I am lucky to have been his patient since diagnosis,will try to remember to tell you his opinion.I know exactly how you are feeling ,it's awful,debilitating and depressing.

Try Yoga breathing ,it does help ,tho not always.Keep Strong.

Meant to say actually my bloods are better than they have been for

eleven years ,so no anaemia.

[DJK12 in reply to Inca]

Thank you - it does help knowing other people have the same problem though I wish we didn't! My daughter who is a physio has been giving me breathing exercises for the last few weeks and you're right they help. I am very grateful for rux - despite anaemia and breathlessness it has kept my platelets and spleen down and I've been through everything else in the NHS's mpn pharmacy cupboard.

[Cja1956]

Yes, I did gain weight steadily while I was on Ruxo. But like Inca, I am slim to begin with, so i didn’t mind so much. My appetite increased while I was on it. About 2 years ago, I was diagnosed with post Et Mf, and my new doctor took me off of it. I have lost all the weight I gained, mainly because I get full much faster now. I believe it’s because Ruxo reduces spleen size, so you’re able to eat more. But, my hematologist thought it worsened my anemia, and my spleen seems to be fine.

[Inca in reply to Cja1956]

I have less appetite since Rux,so it obviously affects us in different ways.All my bloods have improved signifantly,just think I tire more quickly,that of course could be getting older!!

[soomoo in reply to Cja1956]

I too am post et mf. What do you take now off the ruxolitinib please? I don't have a spleen ( a clot made it atrophic) so enlarged spleen is not a concern. Thanks for replying x

[Cja1956 in reply to soomoo]

I take hydroxyurea, fedratinib, and baby aspirin. When I was first diagnosed with post Et Mf, my hemoglobin was 8.9. My doctor had me come in for weekly labs and began EPO injections. If my hemoglobin went below 10.2 I got an injection. I did this for 4 1/2 months, until the beginning of 2020, and then I didn’t need the injections anymore. I started seeing her every month or so, unless I had a problem. Although not normal, my numbers have been pretty stable the last year and a half. My platelets are still hovering around the 700,000 range, but I don’t want to take any more medication. I wish you well.

[Magentas in reply to Cja1956]

So is that the only reason you’re on Fedratinib, because of the anemia frim Rux?

[Cja1956 in reply to Magentas]

Well, it was the first drug to be approved here in the US, specifically for myelofibrosis. It was approved in August, 2019, and my doctor prescribed it in November. I felt like a guinea pig because it was so new. But it has served me well so far.

[Otterfield]

I have gained weight but I had become frighteningly thin during the year before my diagnosis (post ET MF). I am now at the low end of a healthy weight but I want to gain more as I think I need to in order to prepare for a (possible) SCT. It is mostly on my tummy which obviously is not ideal but my arms and legs have filled out a bit too. I am happy to have some flesh to grab for my EPO injections!

[DJK12 in reply to Otterfield]

Like you I lost a lot of weight first at progression to MF then even more after an unfortunate very serious reaction to interferon. Some weight thankfully came back on after starting rux but stabilised well below my previous weight. I wondered whether it was because of the continued anemia which like you I have EPO injections to counteract? My appetite is definitely diminished despite my spleen greatly reducing in size. Bit odd as I was warned about possible weight gain and it does seem the more common side effect.

[Otterfield in reply to DJK12]

I am also well below my previous weight but now a healthy weight at least. I went down to 7.5 stone last year and found it painful to sit on anything that wasn't really soft. Interesting what you say about interferon, I was on it for a year and felt mostly okay but my appetite dropped dramatically.

[Rachelthepotter]

Hi. Gaining 5 - 10 kg on rux is almost universal. Seems to change your bodies set point for weight. It would be interesting to look at the mechanism: any researchers interested?

[Quitojohn in reply to Rachelthepotter]

Hi Rachel, this is because of the Leptin problem. See nextlink:ashpublications.org/blood/a...

[ainslie]

Rux has a tendency to increase weight, I cut out sugar and refined carbs and my weight is the same as pre Rux, I have to be a bit careful re how much I eat but have 3 full meals a day and do some sort of exercise daily, I know it is easier for some than others but it is doible

[Psteuer]

I was told by my Stanford Medical Center HEM/Oncologist that the average weight gain on Jakafi/Rux is 14-25 pounds. I've gained 24 pounds in the six years I have taken Rux. Like others have said, I was always slim, ate a very clean and healthy diet and had regular moderate exercise every week. That hasn't changed in six years. I was very dismayed when the weight gain started. My perspective is this: Rux works far better for me than Hydrea did. Hydrea gave me horrible diarrhea, so in the end I couldn't tolerate it. Rux was the best option. It has controlled my blood counts exceedingly well for 6 years. The cost here in the US - even when on Medicare (our only form of Universal Health Care) is very high - $3000 for the first month and $809 for each additional month. That was an enormous shock after paying only $25 per month prior to age 65 for refills with the discount card offered by Incyte, the company that manufactures Rux. I wish you luck coming to terms with the weight gain. My BMI is at the high end of normal, but still just under the range for obesity. At least there is that!

[Airslie]

I’ve been on HU for 11 months and have put on about 7 pounds. So discouraging. I’m trying to stay active and watch my calories daily and I’m praying I don’t gain anymore. Does anyone know why we gain on this drug?

[Buggerbear]

I have been on Jakafi/Rux about 16 months for PV and ET and my weight has increased 20 pounds. I am small frame and never had to sorry about my weight before. Also had issues with breathing and fatigue.....very depressing. However, my numbers are good so guess you have to take the good and the evil.

[soomoo in reply to Buggerbear]

You're right. My numbers are good on ruxolitinib so I am grateful but the weight gain does get you down sometimes.

[S031251]

Hello soomoo I have been on rux fir 2.5 years and started to put weight on straight away. When I tried to lose it the weight just would not budge. I have stabilised it by eating a lot less generally - carbs are the killer (we all eat too much anyway) and exercise as much as possible. At least it keeps my counts normal- we can’t have it all ways unfortunately . Hope you find a way to keep your weight down .Anna

[soomoo in reply to S031251]

Thanks Anna. I shall try cutting down the carbs. I've just got to be thankful for feeling so much better on ruxolitinib. It did get rid of the pruritus which was restricting my life.

[S031251]

It got rid of my pruritis as well and I am forever thankful for that.

[3195]

Weight gain happens with most patients on rux. I forget exactly why, but I think it is because it affects our metabolism. You could check the Incyte website, or MPN research Foundation for details

[Quitojohn in reply to 3195]

ashpublications.org/blood/a...

[3195]

I found a link to this question. Dr. Reuben Mesa on Patient Power. patientpower.info/myeloprol...