Weight gain : Hi lovely people Does anyone else have... - NRAS

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Weight gain

Ferret18
Ferret18

Hi lovely people

Does anyone else have problems with their weight? I’m on 25mg Methotrexate, folic acid, hydroxychloroquine and ibuprofen twice a day.

I’ve struggled to exercise because of the pain although getting back into the gym and cycling now but I’ve put on so much weight and wondered if it was in part due to the meds?

Thanks

71 Replies
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Hidden
Hidden

Hi Ferret18 and welcome. Do you keep a ferret, or is that a nickname. Interesting wee creatures are ferrets :)

As far as I know, none of those medications are going to cause weight gain, like for example Prednisone.

So I guess it’s about diet and exercise. The best means of losing weight is walking (believe it or not!), because it’s weight bearing and generally not a cardio workout. The gym and cycling will help, but long, slow distance work is best for losing weight, along with perhaps some diet moderation?

The problem with RA is one can feel bad and that obviously can make exercise difficult. Personally, I’m a golfer, which gives me lots of walking and “rotational” type exercise. It kills my feet (even with orthotics), but without golf, my mental health would be v.poor - so swings and roundabouts. I used to weight train at a gym. I’m now doing TRX suspension training, as a) I can do this at home and, b) I find it better for my body.

Everyone has to find the right balance between what’s “good exercise” and what keeps them interested, hope this helps, cheers Deb :)

J1707
J1707
in reply to Hidden

I have put on over 2stone . I have always been active (I do 4 classes a week and walk everyday when I’m well enough)and watch what I eat. I’m on mtx and within six months I gained 18lbs. They say it doesn’t make you gain weight but I definitely did and no amount of dieting will shift it I do gain weight during flares but when I start exercising again I will lose that weight but not my initial gain😤

Hidden
Hidden
in reply to J1707

It’s the “long, slow, distance” part that is the key. As a walk, golf is not brisk - it’s an amble of a good 5-6 kilometres - it’s not a cardio workout. In my case, it’s closer to 8 kilometres over 4 hours. That’s why public health suggest walking a couple of bus stops on the way to/and from work, in order to fit it into a daily schedule. And I know that walking is not possible for lots of people with RA, but a long, slow weight bearing “something” would be equally suitable.

It would be great if NRAS could actually tackle this issue and offer some help, cheers :)

Ferret18
Ferret18
in reply to Hidden

Yeah I do cardio twice a week for half an hour as well as cycling when I can. I recently did a 110km ride so it’s not lack of exercise

Ferret18
Ferret18
in reply to J1707

It’s so frustrating- I was so fit and healthy before this. Trekked to Everest basecamp and all sorts. But I’ll get there again. Good luck

Poshcards
Poshcards
in reply to J1707

I have gained a lot of weight too, and I eat very little as it affected my appetite x

Ferret18
Ferret18
in reply to Hidden

Hi, my first name is the name of a female ferret 😂😂

I think you’re right it’s just about doing what I can to get back into exercising without overdoing it. I do yoga as well which is great

cjsabc
cjsabc
in reply to Hidden

Spot on Yanni. Getting as much exercise as is manageable (and it'll only improve) and eating high value foods (preferably plant based) and zero rubbish (incl sugar), will work wonders. Personally experienced that transformation.

Chris.

Same here and i’ve wondered the same as you as it’s hard to shift. I’m not on steroids, do an hours walk a day with dog and swim 3 times a week but nowhere as much as I used to, still need to pace and sleep 10+ hours a night. I’ve never been overweight. Weird eh? Perhaps someone else will know for sure but can remember reading somewhere they can cause weight gain. 🤒

Ferret18
Ferret18
in reply to Kerensa21

Thanks for comments. Good luck 😉

HiddenThis reply has been deleted
purl
purl
in reply to Hidden

wow is this just a coincidence but I have put on 14 kg of weight as well since being on meds. Rheumy nurse said drugs do not make you put on weight, it's because not as active and diet can be the main problems. :(

HiddenThis reply has been deleted
Ferret18
Ferret18
in reply to Hidden

Sorry to hear you’re having a rough time

Ferret18
Ferret18
in reply to purl

Still think drugs have some impact

Ferret18
Ferret18
in reply to Hidden

Good luck with it. Keep motivated but also be kind to yourself

I was told last Friday that it's not the meds (taking same as you except 17.5 of methotrexate). Lack of exercise and food was suggested to me, even though I try to get on my cross trainer everyday and I'm not eating a lot and when I do eat it's quite healthy.

Mmrr
Mmrr
in reply to purl

Who told you that purl ?

purl
purl
in reply to Mmrr

My rheumy nurse, also said as one gets older there is a possibility of weight gain. :)

Mmrr
Mmrr
in reply to purl

Yes there is, but the meds we take for RD combined with the inability to move and exercise normally, does lay down weight.

MTX can slow metabolism and steroids make you hungry, so it is a difficult situation to be in. Sounds like the nurse is not realistic ?

Ferret18
Ferret18
in reply to Mmrr

That seems to make sense. Thanks

Ferret18
Ferret18
in reply to purl

😩😩

Ferret18
Ferret18
in reply to purl

The combination of drugs must have some impact surely

Hi Ferret.

Yes I've been putting on weight but it's primarily due to oral steroids and inactivity. Until my severe RA is under control with the latest biosimilar drug I'm on (I'm not on MTX as it gave me too many chest infections) I don't dare reduce the former. I can hardly stand or walk at the moment so I am spending most of my day with my legs elevated to ease pain and swelling in my knees and ankles.

Although I have already reduced my food intake over the past year since the RA diagnosis I I know I should probably eat even less. It seems others have found they put on weight on MTX so that might be part of the problem but you may well have to reduce your calorific intake too.

Good luck!

Hi Lolabridge

Sorry you’re having a rough time. Interesting what you say about MTX. Thank you

Yeah same here, I nearly fainted when I stepped on my scales so I just purchased a blender and got some fruit n veg in plus started swimming yesterday as I dont want this to spiral. Taking 15 mtx per week with daily sulfa and hydroxy. 2 stone over weight. Im planning to have a smoothie everyday for lunch or dinner and no more carbs and processed meat and drink more water. I also walk alot but not enough to shift this so swimming will hopefully cure it. Fingers crossed.

Carbs are the key for me. They are definitely the devil 😂

I gained 4 stone after becoming unwell with RD. I've lost 16 lbs in the past 3 months, mainly through diet, but it is so slow going and getting slower as the weight is coming off. I can't exercise as the RD is not well controlled and I flare easily.

I taking in 1200 -1400 calories a day. All healthy stuff.

Ferret18
Ferret18
in reply to Mmrr

Sorry to hear that. But keep going and it will happen

Hi. According to my dr, new research says that exercising makes no difference at all to weight loss and it’s all about diet. I would agree with this for me because I do exercise but I have a rubbish diet. She says that the weight loss industry have been getting wrong for years and whilst exercise is good for strength and mental health, it won’t shift any weight.😞

Ferret18
Ferret18
in reply to Elmo333

I agree with that. Exercise particularly strength exercise tones you and gives you muscle definition. It’s about putting less into our bodies and making sure it’s good stuff. Easier said than done sometimes.

My personal trainer says “abs are made in the kitchen not in the gym” and he’s so right

Hi Ferret18, I’m on hydroxychloroquine, and am having the opposite problem, losing too much weight. I’m down to seven stone 8 pounds this morning and I was 10 stone last July. But I’ve only been on hydroxychloroquine for 2 weeks, but I’ve lost 4 pounds in those 2 weeks. I have heard though that methotrexate can make you put on weight. Could that drug be the one responsible? I don’t exercise at all (fatigue and the fear of pain afterwards).

Ferret18
Ferret18
in reply to JoonPearl

Gosh really I’m sorry to hear that. Maybe you should ring the rheumy nurse and get that checked out. Take care

No its down to consuming more calories than you need. Meds don't cause weight gain.

Mmrr
Mmrr
in reply to Cheylann

They do

Cheylann
Cheylann
in reply to Mmrr

Some drugs give you an appetite but don't actually put weight on. You have to consume calories for weight gain.

Ferret18
Ferret18
in reply to Cheylann

Good point Cheylann

Mmrr
Mmrr
in reply to Cheylann

But some drugs - MTX for example slow metabolism (unless the manufacturer is giving out misinformation) and as you say corticosteroids increase apetite, hence it is a double whammy for people with RD. Many of us also previously fit, also have mobility issues, so a triple whammy.

Weight is a big problem for the majority of people with RD and not just because we sit and eat pies all day.

Drugs affect appetite and metabolism.

Cheylann
Cheylann
in reply to Mmrr

I'm afraid I don't agree. Drugs don't cause weight gain but eating and lack of exercise do.

I accept that people with RA often gain weight as they cannot exercise due to their illNess but the weight gain is due to a sedentary lifestyle as well as too many calories.

Mmrr
Mmrr
in reply to Cheylann

I'll accept pharmaceutical and medical research over personal opinion. Unless you have an extensive research background in which case I'd be very interested in the details of your published work ?

Cheylann
Cheylann
in reply to Mmrr

No I'm afraid no qualifications just your average person of average intelligence who learnt biology in school and plenty of life lessons from my own experiences and others.

I'm not trying to convince you it's you trying to convince me that drugs make you fat. Not at all. You are what you eat and that is a scientific fact.

I agree that drugs like steroids cause bloating and that RA can sometimes cause you to lead a sedentary lifestyle through discomfort and increased appetite from the steroids but your actual weight gain is down to the calories you consume unless you have a thyroid illness that does cause weight gain so is rare.

I speak from what I've seen and experienced and from what we all know to be true and not from what I've learnt in books.

There is no argument!

Mmrr
Mmrr
in reply to Cheylann

No more discussion from me, but it is way more complicated than calories consumed. Calories are very important, yes, but metabolism is also critical as are the number of biological/chemical processes in food processing it's mind boggling. No scientist would claim to have the answer, we just don't have the information to say this or that is true.

CJ936
CJ936
in reply to Cheylann

You are correct that diet and exercise play a big role in weight gain. However, specifically predisone causes weight gain, bloating. Especially high doses over long period of time will cause a moon face, water retention, weight gain. If your doctor is not careful when talking you off long term high dose prednisone you are subject to terrible withdrawal symptoms that last for many months and make life difficult. At that point when you cannot hold down food or water and are dehydrated and on an IV you will notice a weight loss but you feel like you are going to die.

Cheylann
Cheylann
in reply to CJ936

Ive heard this bit the bloating is not true weight gain it's water retention which as soon as you stop the drug it should go.

Mmrr
Mmrr
in reply to Cheylann

Actually you can die from steroid induced adrenal insufficiency, hence a steroid taper under medical supervision is compulsory for people reducing steroid intake.

We are all supervised closely by both GPs and rheumatologists when coming off steroids. Tapers can last for months, my last programme lasted for 6 months, some people take longer to ensure the adrenals function again.

Many systems in the body are affected by the naturally occuring hormones we call steroids, including glucose metabolism (the clue is in the name glucocorticoids). This particularly true for people with diabetes, or people who are pre diabetic.

Steroids can induce type 2 diabetes ( corticosteroid induced diabetes).

The link with glucose production is very clear.

Mmrr
Mmrr
in reply to CJ936

Yes it's called adrenal insufficiency and can kill.

Mmrr
Mmrr
in reply to Cheylann

Here is a link explaining how meducines can cause weight gain

urmc.rochester.edu/encyclop...

Ferret18
Ferret18
in reply to Mmrr

Interesting article, although none of the drugs I’m on are mentioned. And it says at the end, “But you may need to pay a little more attention to your diet and exercise. If you keep good eating habits and exercise regularly, you might not gain any weight, or only a small amount.”

Good debate guys 😊

Mmrr
Mmrr
in reply to Ferret18

Of course , diet is very important and is keeping as active as you can. But we are all different and experience RD in a different way (There are around 108 RDs, many difficult to distinguish from each other) and the drugs affect us all in different ways. Don't we know that from this forum ?!

People blankly saying they have simple answers to complex issues that no one on the planet understands is a bit off.

Cheylann
Cheylann
in reply to Mmrr

I disagree! No matter what type of RA you have, weight gain is down to a sedentary lifestyle and overeating and not the drugs you take.

Mmrr
Mmrr
in reply to Cheylann

Sorry, I have not explained myself well. There are many forms of RD, some involving complex metabolic as well as inflammatory processes, inflammation creates a change in these metabolic processes. People tend to either gain weight , around 2/3 do, or loose weight after diagnosis, some people stay the same weight. Probably as a result of different disease processes, and different metabolisms depending on DNA makeup.

People do not lie about weight after being diagnosed with RD, why would they, or the rheumatologists, or why would the pharmaceutical companies claim there drugs cause weight gain when they don't . Why would anyone do that ?!

JFlay
JFlay
in reply to Mmrr

When I went to see my GP last November up to starting on MTX in January I was losing weight, about 4kg. After starting MTX (and a steroid injection) my weight has gone up by 3kg. My diet is healthy and I've cut out some things since diagnosis. I'm active, walk every day with my dog at least twice and volunteer as a gardener/groundsman... I'm doing more on that at the moment as it's grass growing season. I did 4 hours a day on 3 days last week and it was like a heavy gym workout each day... had to have 'rest' days in between to recover... two consecutive days is a struggle for me. But I haven't lost any weight! I definitely feel it's to do with the meds 🥺

Mmrr
Mmrr
in reply to JFlay

Weight gain and some meds is well established and acknowledged by the medical and pharmaceuticals professions. I had BMI of 22 before becoming unwell and was very fit. Mountain fit, a long distance walker, swimmer and nordic walker. I walked 30 - 40 miles every week.

I've piled on weight and went through what I can only describe as hypo, low sugar type stage in which I became thirsty and chalk white too, this happened in the early stages of my RD, which only resolved with consuming sugary foods, otherwise I became quite ill, and could not stand /support my body. I've been investigated and am not diabetic. I've undergone water deprivation testing (not pleasant) and my kidneys are fine, I'm not holding onto fluids either.

I am still under the care of the endocrinologists, who have suggested inflammation to be the cause of the hunger, it happens and is under reported. My hunger seems to have settled a good bit and the benepali has really curbed my appetite.

I struggle to loose fat, but have some evidence of muscle wastage (cachexia), which is not uncommon with RD, people who try to loose fat with RD, can keep the fat but loose muscle.

I've been advised by the rheumatology physio to keep my protien consumption up to help prevent the muscle loss. I consume around 1200 calories most days, sometimes 1400 if I am out. Well below my recommended level for height, weight and skeleton size. I keep a diet diary so I know what I eat on a daily basis, but have only started to lose weight since coming off MTX and starting on beneplai, which I'm stopping to begin Baricitinib this week. My gut took over 3 months to settle after coming off MTX. I'm still on steroids.

Trying to keep the protein, calcium, vitamins and iron intake up is challenging on the low calorie intake. I'm not a big red meat eater, but do eat fish and dairy.

I know Baricitinib can affect your gut too, so fingers crossed it doesn't up my appetite again.

My RD is not well controlled, I struggle to walk any distance and cannot exercise, so all in all it's a bit of a challenge. There are many like me.

Blaming people for weight gain with RD is somewhat naive to the complexity and interdependence of bodily biological processes. If there were easy answers we would have them. 2/3 of people with RD do gain weight, we are not all lazy over eaters, quite the opposite, many of us on this site have been active, healthy people before becoming unwell.

Cheylann
Cheylann
in reply to Ferret18

Thank you. It's what I've been trying to say. People like to use meds as an excuse for their overeating and hence weight gain. I call.that lying to oneself.

I’ve put on over 2 stone and am now steroid induced pre-diabetic. Also steroid induced osteoporosis( just broke my wrist) 😱 Have finally found a med that works and down to 5 mg pred.. Tried slimming world( and that didn’t work!) now with the thought of diabetes in my head perhaps I’ll stop munching on stuff that makes me feel good!!... walk most days with the dogs and have started swimming. It’s difficult when things aren’t great to even care... time to be serious about it!...hey ho!

I feel your pain. It's so hard to try and lose weight when you don't feel well but at least you are being honest with yourself about eating too many good things.

My weight was starting to creep up just a tiny bit several months before my diagnosis last year. Not a huge amount by any means, but enough that if it continues it will add up over time. Now I'm on 15 mg. methotrexate and 20 mg. leflunomide (and soon to switch to Enbrel/etanercept). My weight has continued to very slowly creep up, but I can't really blame the medications since the weight creep started first. I really think mine is due to aging and being a little more sedentary. I don't necessarily believe that structured exercise helps with weight loss or maintenance--studies have shown that most of us tend to eat more to compensate for that type of exercise--but I do tend to think that doing a little less normal movement throughout each day probably does. It's similar to what YanniBaci said about long, slow movement--that's the type of exercise that probably doesn't cause us to eat more to compensate.

YES! Gained 20 lbs in 7 short months! It is ALL due to the dreaded prednisone!!

I hate it! Need to take it everyday, because waiting for the correct biological to work! Nothing seems to take away the pain except the prednisone!

I want off it so bad but what can I do? Not take it and be immobilized and not be able to work?

Dr says "Be patient" he will find the correct one EVENTUALLY!

Be patient?

I am a small framed woman and my whole life weighed in between 115-120. I watch what I eat, walk on my treadmill for an hour everyday before work, but it does not matter. The additional weight just comes & comes!

Now I am 140lbs have the moon face thing going on & look like a fat cow!

I hate this disease!

Mmrr
Mmrr
in reply to Troygirl

I empathise with you I'm in a similiar position. Only prednisilone seems to help at the moment. But starting a new biologic next week 🤞

Taken MTX for 40 years and never put on weight. IMO it's only Prednisolone that increases appetite that can make some put on weight.

Mmrr
Mmrr
in reply to BoneyC

It depends on the way your body metabolises the drug whether you put on weight or not.

Interesting. Only had one course of steroids right after diagnosis a year ago. I suppose drugs can have different side effects on different people.

Hi Ferret18. I haven't heard of anyone putting on weight as a result of taking MTX. I had a similar problem after my RA diagnosis. I was in a lot of pain and, having always been reasonably fit, I was struggling to maintain my exercise regime. It took a while for the penny to drop but, eventually, I realised two things. The first was that whilst I was able to do less physically I was still eating the same. Once it dawned on me that less activity requires less fuel I modified my diet which certainly helped. The second thing I realised was that whilst I could and should still exercise my old regime was no longer appropriate, or even advisable so I turned from Gyms and weights to walking and stretching exercises such as Pilates and Yoga. It works for me. I find that a walk for an hour at a moderate pace interspersed with three or so brisk walking intervals seems to do the trick. Of course your problems may be different to mine and we all have to find our own way of maintaining our fitness in the face of our health problems. Good luck with finding what works for you.

Ferret18
Ferret18
in reply to mickam

Thanks for the tips. Still struggling to think I won’t be as fit etc as before. All part of the process I guess 😔

Hello Ferret18

I’m not really sure but I’m on all of the above and also have thyroid and diabetes problems and find it really hard to control the weight.

Also on benepali injections but I’m not sure if they are helping me as I feel soooo tired more like exhausted and ache constantly, I look forward to my bed but feel guilty as so much to do but I have to admit I just can’t do it now.

I hope you find an answer, take care,

Best wishes from Sheila x

I am having weight issues on the Methotrexate. I am no longer taking the hydroxychloroquine because it caused glaucoma that was quickly remedied when stopped. I am also no longer taking 60mg of prednisone daily, which caused me some terrible withdrawal symptoms when stopped. I am finally getting my weight and pain regulated through diet and supplements. I take turmeric daily and when I find the root in at the grocery store I make tea with honey, pepper, ginger root, and turmeric. That greatly reduces my pain and makes me feel healthy and well for several hours. During that time I am so productive and happy. Folic acid is one of the supplements that I take daily and I really feel it when I miss my supplements for more than 1 day. Additionally, my diet has changed I eat more salad greens with walnuts and blueberries. I learned about turmeric from an Indian woman and asked my Rheumatologist who confirmed studies with good results. It has made a world of difference for me.

Ferret18
Ferret18
in reply to CJ936

Hi CJ936, thanks for sharing your story. Good luck with the healthy eating

I don't know either way, but when I am ill I lose weight and when I am well I put it on

like now I am starting to put some on

Ferret18
Ferret18
in reply to VeronicaF

😔😩 stay strong

I figured once I got off the Prednisone I would drop the weight and I started MTX and I am just as big if not a bit bigger than I was 3 months ago when I started MTX. Pain does stop me as well but I am swimming now once a week for 3-4 hrs each time. Pain not really subsiding and neusea which I thought would get better in time is worse.

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