Biologics and weight gain: Hi everyone I just wanted to... - NRAS

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Biologics and weight gain

Wizard12
Wizard12

Hi everyone

I just wanted to ask others who have been on Humira or/and Cosentyx and have had weight gain (specifically around the tummy).

It seems no matter what i do i cannot shift a thing! Really struggling with it now and just wanted to hear other peoples thoughts and if they have managed to lose weight or if anyone who has come off it has seen the weight come down or remain the same.

Thanks

38 Replies
oldestnewest

HI Wizard12,

I have no personal experience of cosentyx, but Humira (and several other biologics) caused me to gain 20kg. I am still carrying 20kg of extra weight from Actemra, that won't shift despite having stopped actemra months ago.

It is a known effect of biologics, but it doesn't happen for everyone. Rheums are acknowleding it now. A prominent rheumatologist blogged about it:

bjchealth.com.au/connected-...

And you only need read the comments to realise its a very real effect for many people.

All you can do is eat a heatlhy diet, exercise as much as your body will allow and decide if the benefits are worth the weight gain.

Many people will tell you that you must be eating more, or that the weight gain is from RA itself. This is NOT true. Its a real and proven effect. The science is there. I know how hard it can be to deal with. If I had known that actemra would do this I would NEVER have taken it. My arthritis has improved, but it isn't worth it to me. I wish I had a solution, I am eating less than 1000 cals a day, and exercising, and no weight loss. I just want to say you're not crazy, it IS the meds whether some people/doctors acknowledge it or not, and it may not be possible to do anything about it. It isn't your fault, I want to offer my support, and understanding.

Best to you

Wizard12
Wizard12 in reply to lilyak

Hi lilyak

thanks for your reply and your support. It's good to hear i'm not the only one. As the medication is working no one is really taking the weight gain seriously and like you if i had known the side effects of this drug i wouldn't have gone on it. I also am eating less than 1000 cals and exercising and not a pound off!

it's not just the weight gain, previously to starting this medication i had no issues with mental health, now i take each day one day at a time, its put a strain on my marriage. i'm not as with it as i used to be. Yes mobility wise its fantastic and ticks all the boxes regarding my arthritis but it has come at a huge cost and i really am considering coming off it. I feel guilty though as some are fighting to come on this type of medication and here i am resenting it.

Thanks again for your kind words

AgedCrone
AgedCrone in reply to Wizard12

If you feel the drugs you are on are affecting your mental health I would definitely speak to your rheumatologist and asked to change.

I reckon prednisolone nearly sent me mad in less than a few weeks and my rheumatologist did say it has that effect on some people so if Pred has that affect other drugs may have it as well.

Wizard12
Wizard12 in reply to AgedCrone

I did speak quite frankly to them about it and that why I came off humira although they wouldve allowed me to stay on. It was my decision to come off. Pred- never had any side effects from that mental or physical. Cosentyx seems to be having the same effect as humira both physical and mental and I think they will just leave it to me to make the decision as they will see that it's working. My crp will be low so for them all good. I just feel coming off it will for them be like well we've done all we can....

Help-
Help- in reply to lilyak

Hi, I just wrote about my weight gain and my frustration. Have you had any luck with any loss since switching

Wizard12
Wizard12 in reply to Help-

Hi, unfortunately not. Switching to cosentyx I have put on a little more weight mostly round the tummy and just trying to keep it from not increasing. How are you getting on

Help-
Help- in reply to Wizard12

I'm so sorry I feel your pain. I googled and read that some people tried water pills. My RA Dr is very against them but I'm going to try them anyway. They said one pill every four days. This is one side effect they never told us about and as you I would definitely not have taken. How long have you been off?

I have been on Humira and did put on a lot of weight like you around the tummy. Came off because of side effects. Now on Corsentx and I find its not as bad as Humira . At the moment I am unable to exercise due to injuring my knee and now waiting for an op. I have now joined a slimming club and the weight is coming off very slowly ! It's so disheartening as the tummy (like bloating) remains the same. If anyone has any solution to this problem please share !

Thanks

Wizard12
Wizard12 in reply to Jan101050

It is disheartening because it affects your morale especially when your doing all the right things.

AgedCrone
AgedCrone in reply to Jan101050

I wonder if because the drug is actually working we feel so much better we unconsciously eat a few more ‘goodies’.....but don’t eat more in our regular meals....so we don’t realise those few extras add up?

Well..that’s one excuse isn’t?

Wizard12
Wizard12 in reply to AgedCrone

I know I'm not doing that as I'm so desperate to lose it. But if you are it's crazy that you cant have a few goodies without having such drastic results.

AgedCrone
AgedCrone in reply to Jan101050

I know this may sound odd but do you drinking enough .....are you keeping hydrated? Years ago a trainer at the gym told me that the body retains fluid if it becomes dehydrated...& it shows around your middle & that was why I had a tummy....even though I had no fat elsewhere (that was a long time ago!)

Upping my fluid intake did help shrink the tum.

Wizard12
Wizard12 in reply to AgedCrone

I certainly dont drink enough and am conscious of that but as soon as I up it I cant stop going to the loo! Which affects my sleep which then affects my body. It's a viscous circle.

AgedCrone
AgedCrone in reply to Wizard12

Why not give it a go ......if you get dehydrated urine gets very concentrated in the bladder .....so it wants rid of it.....so you keep wanting to go to the loo. So why not try drinking more and put up with the rushing to the loo for a few days and then it might settle down ...more dilute urine won’t irritate so you might ‘hang on’ longer ?

Probably not very scientific but sort of sense & it might just work?

Wizard12
Wizard12 in reply to AgedCrone

Yeas well its worth a try

AgedCrone
AgedCrone in reply to Wizard12

Good Luck....quiet weekend...just you & a loo?

Wizard12
Wizard12 in reply to AgedCrone

Lol! Yeah definitely! Thanks again.

Jan101050
Jan101050 in reply to AgedCrone

I think you are probably right ! I used to do a lot of exercise which I enjoyed and drunk loads of water during the day. In June I had a heart attack although I was very low risk . I had a stent fitted and was informed by cardiac guy having PSA was a risk factor also biological meds wouldn't have helped ! My heart wasn't damaged so I was very lucky. Unable to complete cardiac rehab as I had a nasty flare. Then to crown it all I damaged the cartilage in my knee and having an op in two weeks. Looking back on it all my intake of water was rubbish ! I have also joined a slimming club which makes me more determined. Just looking to reduce my fat tummy !

AgedCrone
AgedCrone in reply to Jan101050

Gosh that’s scary! Hope you are OK now?

Jan101050
Jan101050 in reply to AgedCrone

I am fine now although at the time I couldn't believe it had happened to me. Don't smoke , excercise and don't drink to excess. Now I have a stent there should be no reason why it should happen again. The weird thing is when I was admitted to A&E my ECG was normal, blood pressure a bit raised but I did have a horrendous pain in my jaw which got worse on exertion. A blood test proved I had had/ was having a heart attack. It has nearly been a year now and don't really worry about it...have been told the risk is very very small of having another one. Thanks for reply.

Wizard12
Wizard12 in reply to Jan101050

Wow that is scary. So having PSA is a risk factor for a heart attack?

Jan101050
Jan101050 in reply to Wizard12

Seemingly it's to do with inflammation RA and PSA . My cholesterol was 5 maybe could have been a bit lower but not in the high range. Blood pressure ok and I did excercise as much as I could. Sometimes there is no answer and as I was told these things happen ! Anyway I don't dwell on it just keep taking the tablets....my body is chemically controlled ! If you are concerned it's worth mentioning it to your rheumatologist although I don't think they are all that aware.

I have put on 8 lbs in a year on Benepali!

Wizard12
Wizard12 in reply to vonniesims

Me too! and because i'm only 5ft putting on that amount really shows, and clothes...well need a new wardrobe!

Happened to me on Humira.20lb and back then Rheumy's were in denial...........as I am 5ft 1in it was ghastly.Since I am also on a benefit I had very little $ for a whole new wardrobe as nothing fitted anymore.I finally got a GP with an interest in RA who acknowledged the problem.She was concerned that it may cause diabetes , suggested a "mitochondrial diet" which is cutting out carbs and sugar. It was tough but I lost 14lbs .It was just so great to find someone who believed me as well as trying to help. Now of course it is a known side effect for some people.The drugs do work for my RA, I am now on Enbrel which works for me..............I only inject when I feel the need!!! Through the summer about once a month depending on what my body is doing.I now eat how I normally would and weight has remained off.Still have far more on my stomach area than I ever had in my life , enough has gone to do my clothes up again...............I guess I could do the strict diet again if I really needed . Just reducing calories did nothing for me either, 1200 a day and I was still gaining!

The sugar & carbs were causing the problems + the biologic!!!!!!!!

Wizard12
Wizard12 in reply to sebbydog

So glad you seem to have it all under control. My consultants still dont acknowledge weight gain as a side effect and the people that do dont understand what the problem is and just say well you decide what's more important.

My GP doesn't seem to have anything to do with this side of things leaves it to the consultant.

Your diet sounds interesting. Did the weight come off whilst still on Humira and what made you change to Enbrel?

I have thought about injecting when I need to rather than monthly, but have never posed the question. How did you come to that? Consultant recommended or you? Sorry for all the questions just want to be confident when speaking to my consultant about possibilities and not let them fob me off.

Thanks for your reply. Has given me some hope

sebbydog
sebbydog in reply to Wizard12

The weight began to increase on Humira, then the good effects of Humira wore off and I was changed to Enbrel which worked for me.............however the weight kept increasing.The Rheumy + my GP said the usual... choices/ menopause(I was long past that!)And then I got a new young GP with an interest in rheumatology. Miracles , she listened and came up with the mitochondrial idea. I went all out with it, got cross as I did not think it was working...as the low calorie diets had not. About 6 weeks in I suddenly had lost 7lbs or so!!!!!!!!Kept going and lost 14lbs and then came Christmas! Gradually returned to my usual diet.The weight has stayed off , have not lost anymore though.But I know it works if I want to shed a bit more.

I am supposed to inject weekly but as I am sort of in remission, particularly during the summer I decided I did not need weekly! Told my Rheumy...........I do not suppose they approve but too bad. My body =my decision.I now inject when I feel too many twinges coming back.....3 weeks, 6 weeks I decide!

Have read articles about what happens when people stop then start again, seems to work for most...................

I have very little faith in the treatment of RA............no one seems to know much other than what the drug companies tell them.

There is lots more I could go on about but will not bore you. I was diagnosed in 2005.None of the usual drugs had any effect. Went onto Humira in 2013. Enbrel 2014

Wizard12
Wizard12 in reply to sebbydog

Humira did work for me but side effects reason i came off and reluctantly was convinced to try Cosentyx. Again is working but....

Need to look into this diet and give it a go.

What does no carbs and no sugar actually mean....what can you eat?

sebbydog
sebbydog in reply to Wizard12

Similar to Keto...............plants, some meat & dairy,some fruit(it has lots of sugar).Just look at Keto on the Inet.I love bread and

sweet things so found it tough..............but it worked.You would be surprised at the amount of sugar in various food! And carbs are converted to sugar...........

lurking here...so anyone had zero weight gain on Humira?.... :O This sounds...unfourtunate

Lots of lucky people...............it is an individual lottery!

Hi Wizard 12

Are you still taking Humira ?

Wizard12
Wizard12 in reply to weymouth321

No stopped humira carried on with previous meds of methotrexate, prednisone, hydrochlorquine and then started cosentyx.

weymouth321
weymouth321 in reply to Wizard12

Have you read my past posts on Baricitinib and weight gain ?

Caused shingles, ineffective ( ultrasound ) and gained 10 kilos in 12 weeks, so stopped. Taking 400 mgs Ibuprofen , Leflunomide, and Omeprazole since Nov 18, when stopping Baricitinib.

Wizard12
Wizard12 in reply to weymouth321

Just read the thread. Sounds like you had a nightmare. Glad things are better.

weymouth321
weymouth321 in reply to Wizard12

The link lilyak advises is excellent - bjchealth.com - see above

Haven’t weighed myself recently, but pretty sure not gained more, but still unhappy re weight gain, so planning on 1,000 calories daily - just reading Dr. Micheal Mosley books from library. Happier hovering round 10 stone - 5’ 8 “

My sister is following a strict diet for a long time now. Her nutritionist has tried so many different diets, but it looks like none of them work. She is trying so hard and it is really sad to see that there is almost no progress. One of the most annoying things, beside the fact that there is no progress, is that everyone in USA uses different units and we had no idea what does 170 pounds mean. I had to find a way to convert all the units and thankfully I had luck in finding a really cool one at rocknets.com/converter/weig... . You can also convert miles to kilometers, celsius to fahrenheit, it has everything you need!

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