Excessive weight gain on biologics: Hi all, I have been... - NRAS

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Excessive weight gain on biologics

Help-
Help-
51 Replies

Hi all, I have been on numerous biologics and for the past two years have been on , please excuse my spelling, Areva. I have gained 12kg and no matter what diet plan I go on, can't lose a single Kg. I am totally desperate. I am feeling so much better on this biologic. I have been struggling for so many years in severe pain over my entire body. I am a small framed person so the extra weight is a problem. Has anyone please have some magic wand???? By the way this site just popped up in my mail and I'm thrilled!!

51 Replies
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Wizard12

Wow I could've written this post. Exactly the same for me. I am small also and so any small weight gain makes a huge difference. I am also feeling much much better and loving the mobility but weight gain and low mood are making me think twice about carrying on

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Help-
Help-
in reply to Wizard12

It's ridiculous and so not fair. I actually went and got myself some water pills to try. My GP gave me some to take with potassium. It's so strange that I have been on biologics for about 6 years and I have this extreme weight gain now

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Frankiefocus

Hi, I was diagnosed last summer with seropositive RA and take methotrexate injections weekly. Since then I have lost around 14lbs or 1 stone in weight by changing to a plant based diet. No dairy or alcohol aswell, it isnt easy and does not fit with everyone and I wasnt really looking to loose weight as I was only 2 stone over weight but my diet was bad with junk food almost everyday and 2 bottles of wine every weekend.

Now I feel alot better apart from the odd flare up and dry mouth which is probably sjogren's syndrome. I must add I bought a mountain bike and cycle 4 mile around 3 times a week and try and go for a long walk if not cycling.

Sugar is the hardest thing to quit as I now crave a treat as I'm off the booze but I have to say compared to 2 years ago I look better and feel better apart from RA.

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Help-
Help-
in reply to Frankiefocus

Thanks for the info. I was on methotrexate before my biologics and my weight was not an issue at all. I was always under weight which is also why this weight gain is so difficult for me. I have developed so many allergies that I actually carry a EpiPen with me. They don't know what it is from so suggested I cut out a lot of food groups. I do agree with eating cleanly. Unfortunately this weight gain on biologics has absolutely nothing to do with the way you eat. That's what is so disheartening.

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J1707
J1707
in reply to Help-

I gained lots of weight when started methotrexate can’t shift it for love nor money. I eat healthy small portions force myself to at least walk albeit slow on a bad day and on a good day (rare these days) do a class.i have even fasted NOTHING WORKS. I too now carry an epipen and take 3 different antihistamines when having a flare. A immunologist said I have allergic reactions due to the body being under stress especially bad if i push myself during a flare or infection. I down tools now when having a flare it has helped with the allergy. In hot humid weather my body can’t cope that’s when my allergic reactions are at their worst.

When I flare I can gain up to 8lbs I’m so swollen. Retaining water?? Must ask my Rheumatologist has been particularly bad this year.

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Help-
Help-
in reply to J1707

You sound just like me!!! I take strong antihistamines every day. I also take just before my infusion. I have had a back op three years ago. Now I have severe pain in my lower back again. I had a MRI and the neurosurgeon said I am having a flare up of arthritis in my back. So it's fun and games as apparently I will need to change my biologic so they can treat my back

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J1707
J1707
in reply to Help-

🥺the disease that keeps on giving

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Help-
Help-
in reply to J1707

So sad...but I had to laugh plus a bonus... you put a smile on my face

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J1707
J1707
in reply to Help-

😁

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Wizard12

How did you find your palate after methotrexate, i went off so many foods so cutting out lots of things worries me. Envious of the weight loss.

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Help-
Help-
in reply to Wizard12

Wow....you ask such a simple question but actually my entire palate has changed. After the menths my usual foods I couldn't eat or actually drink a cup of coffee. I know that you are eating cleanly, but I actually lived on coke ,as that also helped with the nausea. Even since the biologics my eating habits have changed as I can't stomach any sauces on my food. Everything has to be bland.

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Frankiefocus

My palate has changed to like more vegetables to be honest, the first month was rough as I was visiting the toilet alot but this is normal. After that I enjoy steaming all sorts of veg and eating sweet potatos or rice. there are loads of different dishes to discover and I do take vitamins B12 and D3 as this was advised by my GP.

I have to add that after watching the "Earthlings" 2005 documentary which shows the horrible things that farmed animals have to go through in the slaughterhouse's just put me right of eating meat ever again. I love animals and just hate the way we as humans treat them to be honest, its disgusting and everyone needs to have the guts to watch this and then decide.

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Help-
Help-
in reply to Frankiefocus

Thanks for all your great advice. I do hardly eat any meat, chicken or fish. I can't guarantee that i will watch that as I adore my animals and am very sensitive to those issues. I do know diet plays a major role In RA. If I go overboard with sugar in any form, my mouth gets covered in thrush immediately.

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Brushwork

I am totally with you regarding the plant based diet. My own diet sounds very similar. My weight dropped in the last year by 2.5 stone, more than I would have liked, but I feel much better for it. I too cut out all sugar, dairy and processed foods. I walk 2-3 miles each day, I try to play golf a couple of times a week and I do pilates a couple of times a week. I feel much better.

My flares were less aggressive but kept on coming and my Sjogrens hasn't stopped. So I have just started on Amgevita. I am hoping that it can't make me gain weight if I stick with my healthy lifestyle.

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Frankiefocus

I just read that Humira is the brand name of the original adalimumab medicine. There are now 4 new versions of adalimumab. Brand names include Amgevita, Imraldi, Hyrimoz and Hulio. More brands are likely to be available at the end of 2019.

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Help-
Help-
in reply to Frankiefocus

Have you been on biologics before? I live in South Africa so we only get the meds a few years down the line

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AgedCrone

If you mean Arava , that is Leflunomide & is a Dmard & is usually known to be more likely to cause weight loss.

Did you gain most of the weight prior to starting it?

I took it for 3/4 months & it had quite the opposite effect....I lost around 15kg as it took away my appetite completely....& I had to stop it immediately.

Have you spoken to your rheumy nurse and asked her advice?

It must be really distressing to have altered your diet & still not lose any weight.....do ask your nurse for advice.

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Wizard12

They usually listen to what you say but dismiss it. They don't seem concerned with weight gain just if it's ticking the boxes regarding the arthritis.

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Help-
Help-
in reply to Wizard12

I do apologize..... I got my names of meds mixed up. Arava helps brilliantly when I have a flare up. It never caused any weight loss

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AgedCrone
AgedCrone
in reply to Help-

So which drug are you taking now that you think is causing your weight gain?

Have I missed something?

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Help-
Help-
in reply to AgedCrone

Actemra,my biologic has definitely caused my weight gain. Previously I was on humera infusions. I then started injecting myself with the humera at home. I had a allergic reaction to it. Apparently the dosage is different to the infusions. I then changed to the Actemra. That was when my weight ballooned. I look like a blow fish, I'm very puffy

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AgedCrone
AgedCrone
in reply to Help-

I’d definitely insist on seeing your rheumy nurse...being bloated like that isn’t normal.

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Help-
Help-
in reply to AgedCrone

I know and agree. I actually didn't realise how bloated I was until I saw a picture of myself. I was rather shocked

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AgedCrone
AgedCrone
in reply to Help-

Get on the phone & make the appointment!

If I had to stop Leflunomide because I lost a lot of weight, I’m sure your nurse will want to see how your bloods are having gained so much.

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Help-
Help-
in reply to AgedCrone

Now this is the frustrating thing... every month I am weighed, my bloods are taken. So they are totally aware of what is happening

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KittyJ

I gained a lot of weight through inactivity after being diagnosed and have never been able to exercise properly since. I’m on biologics and have actually found it easier to lose some weight as it has decreased my appetite since being on it. I know I do snack and eat stuff I shouldn’t when flaring to cheer myself up so know that didn’t help with the weight gain. There’s a good app called My fitness pal that I use where you can log everything you eat to see exactly where you are going wrong 😊

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Help-
Help-
in reply to KittyJ

Which biologic are you on?? I'll load the app. I have been on every diet.watched every morsal that has gone in ...I'm just desperate

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KittyJ
KittyJ
in reply to Help-

I’m on Benepali. The app really helped me, it’s quite shocking the calories/sugar/fat in some things.

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Help-
Help-
in reply to KittyJ

My next infusion I'm talking to my specialist. She suggested last month to cut out carbs. Will try that from tom. One just gets so demotivated. I used to be ultra fit. Now I can barely walk up a flight of stairs. This RA has changed my life and my personality

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KittyJ
KittyJ
in reply to Help-

The app can tell you what carbs are in foods too. It also has a barcode scanner to make things really easy. Let us know how you go 😊

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Help-
Help-
in reply to KittyJ

Thanks so much and I will keep you posted

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Minty1972

Interesting as I am now on Imraldi and have lost weight. Could it be something else

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KellyInTexas

I’m on Rituximab. Could it be that they are giving you steroids with the medication? They are with me ( quite a lot) and it’s the steroids that are the issue. Just one though- but that’s so well known I think that must not be the cause.

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Lolabridge

Hi Kellyin Texas

I'm on Rituximab too and, until my RD is better controlled, also taking oral steroids (Pred) and having occasional steroid injections. I thought it was the steroids that have made me put on weight and as I hope to start a taper programme soon was hoping the wight would drop off me 🤞. Is that wishful thinking? Do you think you've put on weight on Rituximab? I know we are given steroids too (30mg I think) before they give us the infusion. 🙁

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Pulfs
Pulfs
in reply to Lolabridge

I'm on retuximab and have put on weight that won't shift ,no matter what I do . I've reached a plateau in weight gain ....no more on but none shifting either. Although RA under control the weight gain gets me down 🙄

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Help-

No I can't take steroids. I wish things with RA were black and white

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Coriander18

Just an observation... I was on just a biologic and then had Leflunomide (Arava) added on top I put on masses of weight... wondered if something has happened with the two combined.... maybe others in that position could disprove that though?

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Help-

I use Arava only when I have a flare up. So I don't know????

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lilyak

Please dont give diet and exercise advice to people who put on a lot of weight with biologics. TNF Blockers and actemra in particular have been shown to cause massive weight gain in some. There is NOTHING that can be done about it. NOTHING.

I was on a liquid diet (due to eosinophilic esophagitis) and now live on veg puree, 500 cals a day. And I am still OBESE. I do 5 HIIT classes a week. I am still OBESE>

This is a real thing. Diet and exercise don't help. These medications change the way your body utilises energy and the effect doesn't always resolve after the medication is stopped. Studies are starting to show it. Hopefully one day they will be able to predict who this will happen to, as it is as bad for me to be obese as having all my other ilnesses put together! And even with my history, my doctors still don't listen.

Offer empathy. Its an awful side effect that causes a lot of distress for some of us.

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Nitrobunny
Nitrobunny
in reply to lilyak

Amen! Biologics are pure hell in the battle of weight gain. I took Actemra for PMR and GCA until I had a reaction from it and it did the same thing to me. It was so depressing. My husband felt so badly for me and would say “How is this happening to you? You don’t eat anything?” As soon as I went off of it weight came off like crazy and pain came back from the PMR. The last thing anyone on Actemra needs is diet or exercise suggestions.

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Help-
Help-
in reply to Nitrobunny

If you came off your Actemra what are you on now ....

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Nitrobunny
Nitrobunny
in reply to Help-

Prednisone- I’ve been through everything else I could take.

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Frankiefocus
Frankiefocus
in reply to lilyak

Wow thanks for this info lilyak, I never knew this about TFN blockers.

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Help-
Help-
in reply to lilyak

I am so with you on this. I have paid an untold fortune for dieticians but to no avail. I'm absolutely devastated by my weight. People think it's conceit. I am actually embarrassed by myself. I want to STOP my biologic but don't know which one to go onto

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KittyJ
KittyJ
in reply to lilyak

We responded to Help-s question, the fact more information came out after responses sometimes makes earlier responses invalid. That’s what happens on a forum, you really don’t need to shout at us. We weren’t giving wrong information just trying to give our experiences 😊

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lilyak
lilyak
in reply to KittyJ

Shout at you??? What the actual. honestly kitty. Have a think.

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Hobbits

I have gained 20lbs since starting Remicade. My specialist says it has nothing to do with the drug. Because the drug is making me feel better, I eat more.

Ok maybe but not 20lbs in such a short time. So my doctors say no, but I’m not convinced.

If you of peri menopause age you may want to look into that. Wreaks havoc on your metabolism, loss of hormones estrogen, everything slows down and pudge out in the belly and butt areas!

Looking into HRT and other more natural solutions. Some women go into peri in their 30’s and other in your 50’s.

Peri also cause joint issues, tingling, urinating issues such as dribbling, leaking, urgency, night waking to pee. Night sweats, hot flushes, back pain, anxiety, brain fog and a host of 50 symptoms. Just thought I would mention as I’m going through this and originally the symptoms were thought to be my disease, when it’s actually peri menopause.

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Help-
Help-
in reply to Hobbits

My Dr said the same to me at the beginning, but that definitely is not the case as I watch what I eat and have been going to dieticians. I am post menopause. If you see the comments of the group it's definitely the meds that has caused the weight gain and the inability to lose any weight which is the most frustrating part. I find that after I have a treatment I have hot flushes for about a week.

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lilyak

This is a link from a prominent rheumatologist. In the beginning he didn't believe this was a true effect. He was finally convinced, and wrote this article.

bjchealth.com.au/connected-...

And it does not happen to everyone. But when it DOES happen, its a lot of weight, and nothing can be done about it. Sometimes stopping the biologic doesn't cause weight loss. And for some people 'just accept it' does not work. I've spent my entire life working hard to maintain lean muscle mass and a healthy body weight. To have this happen to me has been unbearable. And no one has any solutions. I qualified as personal trainer although I don't work in the field and I've done extensive training in nutrition. I am looking into endocrinology and what hormone levels could be involved. If I ever find a solution, I will post here, that's a promise. I see it over and over, rheum prescribes medication, six months later, massive weight gain, rheum starts lecturing patient for letting themselves go! Surely they can see their patients gaining weight! But no, they come up with ridiculous excuses (you're healthier so you're eating more? REally???) and do nothing for the distress that their prescription caused.

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Hobbits
Hobbits
in reply to lilyak

My Specialist said those exact words to me!!! when I mentioned my weight gain.

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