Hi, just a quick question. My husband has RA. Was previously at fit and healthy 60 year old. Now 2 1/2 years on is on Benepali (9 weeks in and no difference yet) and hydroxychloroquine. He is struggling to walk, his RA is worse than when diagnosed and his feet hurt (the pads at the bottom of the foot). He is walking like a really old man. He has also been losing weight all this year. He is now 10kg less than at the beginning of the year and looks skinny. (He wasn't overweight before).It has been mentioned to his Consultant months ago, who wasn't bothered about it. I have told him to ask for an appointment again with the Consultant but that could be weeks away as usual. Has anyone on here with RA kept losing weight for no apparent reason? thanks a lot.
Also on 20 mg Pred. daily.
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Rockky
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I would get him to speak to his GP and get checked over. Losing weight without trying should always be checked out. I hope the Benepali kicks in soon for him🤞🏻
Hi Rocky. I lost a stone when I was first diagnosed and that was mainly because my appetite was poor mainly due to the pain of the inflammation. The first medication I was put on didn't work and I had several chest infections whilst I was on it. However that was ceased and I was put on Etanercept biological treatment which worked really well. My appetite improved and I regained the weight I had lost. It can sometimes take a while for medication to work often more than 9 weeks but I do think he should contact the rheumatologist and tell him/her how much he is struggling. Unfortunately, it's a lot of trial and error sometimes to find the right medication for you. I hope things improve for your husband.
Took 11.5 weeks for Benepali (Enbrel) to work for me, and then it was brilliant for many years. Don’t despair.
I’m in a bad patch right now - first for many years- and have lost 16lbs in a couple of months which I put down to just not feeling well! I’m not really enjoying food they way I normally do, and although our meals are the same I think I am just eating a tiny bit less. One potato, not two. Preferring just some fruit rather than fruit and yoghurt for breakfast. So not worrying for the moment.
hi, very similar to my hubby, just doesn't feel like eating much and has gone off certain foods and probably because he doesn't /hasnt felt great for a long time. Thanks for the reply.
Hi RockkyObviously as everyone has said, it's best to get any other possible causes for weight loss ruled out first.
Like Helix, and perhaps your hubby, my weight definitely seems to be affected by how I'm feeling. When I first developed symptoms 40 years ago when I was 13, I lost nearly 4 stone - just like that! I went down to just under 7 1/2 stone which although I'd wanted to be thinner, looked terrible. I didn't want to eat anything, went off most foods and felt sick a lot. The docs were a bit worried at my lowest, but it did stabilise after that and weight came back on. After being put on steroids in my 20's, like most people, my appetite went crazy and I put lots of weight on, eventhough I still only ate a small range of foods I could "fancy." Over the last few years, I've been trying, and losing weight very slowly (unable to exercise). Since about 2018 though, my old symptoms have returned with a vengeance - I feel nauseous a lot, just don't want to eat much, feel full quickly and have gone off most foods (I can only stomach a small variety of foods anyway). I often have toddler ready meals, or if I have an adult ready meal, I have it over 2 days. This is even with my steroids at 10mg.
There isn't anything else going on with me, it is just down to the RA. It's not great lately and I've had a number of other problems. For me, and some others, it seems to impact on appetite. At present I have one small meal daily, and at lunchtime I have a Complan meal replacement drink as I can stomach those. Otherwise I just have little snacks here and there. Not ideal I know, but what is? The only good thing is that during lockdown, and for the last 18 months (being mostly housebound and at times bedbound), I've still lost a bit more weight!! The things we become grateful for, eh?!
If other things are ruled out for your hubby, then there's a good chance he may be one of us whose appetite etc is affected when the disease is busy. I don't know whether he would consider anything like complain or build-up drinks if he can't face food?
Hope you can find something he can stomach. Best wishes X😊
Def get checked by GP or rheumatologist sooner rather than later. If your husband has been losing weight, as you say, all this year then that’s not the Benepali if he’s only been on it for 9 weeks. Could be the RA generally - I lost lots of weight when first diagnosed (33 years ago) - but it could be for any number of other reasons, not necessarily sinister but needs investigating. Hope he feels a lot better very soon.
Thanks for the reply. Just wondered if having RA and not being controlled very well would cause the weight loss. Had RA 3 years not been well controlled from outset really and worse now than before! I feel no one is really helping him nor even bothered, except me.
I lost a lost of weight when my RA was uncontrolled. Once I was on the right meds and stable the weight loss stopped. Now it's back to watching and trying to arrest the middle aged weight gain.
Has he been referred to podiatrist re feet... GP can make the referral and they will check feet out plus refer onto orthotics for insoles if appropriate- I swear by my insoles and know if I’m not wearing them!!
Hwe hasn't been referred to anyone for anything. Will get him to see doctor. thanks for the reply.
I have the opposite problem 🙄but seriously RA gets blamed for a lot of things . It certainly has for me . Keep to your guns and get checked. As for feet 🤬🤬it’s never taken seriously and impacts on your life tremendously. I had orthotics and physio which helped a little. I have recently been diagnosed with Psoriatic Arthritis as well and only after scans and perseverance . The pads of my feet and planter / Achilles tendons effected. It took me years to get someone to listen so never give up.
I lost loads of weight and has a panic that there was something else - and worse - going on. I even kept losing it when on pretty high dose steroids and that freaked me out because Dr Google is full of stories of people putting weight on with Pred. I now understand it as the inflammation being like a furnace turned up to the top setting and just burning through your energy stores. Five years on I can’t put any weight back on no matter how much I eat. It’s nice not to worry about what I eat but I don’t like looking frail. Once he’s well controlled he needs lots of strength excercise and protein.Bon xx
When I went through my first major flare up I lost loads of weight, I just put it down to the inflammation and my immune system been on overdrive, I’d just had a baby too, the flare up was aggressive and took over a year to get it under control, I’m back to having to watch what I eat now and can easily put weight on if I’m not too carful.Hope your husband feels better soon. I take amgivita injections once every two weeks and I feel so well, never ever thought I’d feel this good after everything Ive been through.
I agree with everyone else that any weight loss should be checked with a GP but with regards to the pain in your husband’s feet has he had a podiatrist look at them? I have had a lot of discomfort with my feet since diagnosis and have been told that the ridges of hard skin that now develop under my feet prevent the undersides of my feet from swelling out causing more pain. Rheumatology do not seem to care much about feet and I now see a podiatrist privately three times a year to remove the build up of hard skin and also numerous corns that have started to develop under my feet since the onset of RA. My RA is under reasonable control but I still need to have this done regularly to help my feet. Hope Rheumatology gets your husband’s RA under better control soon.
Weight loss is a common feature of RA, so my Rheumy consultant tells me. The weight loss stops when the disease is under control. There are many medications, however that seem to increase appetite and then the weight comes back.
I was on Benepali Injections they didn't work for me they changed me to Tocilizumab Injections and hey presto worked straight away came of steroids ok ..let them know its not working..
When my RA was not being well controlled a few years ago I lost a lot of weight. I had gastroscopy and colon CT scan but nothing sinister found. I just didn’t really feel like eating and I felt full really quickly. I was referred to a dietician. The consultant came to the conclusion that it was uncontrolled RA that was causing the weight loss. I have been on a biologic, tocilizumab, for four years now and although it took a while to kick in it has worked really well. I’m now back to watching what I eat so I don’t put too much weight on!As other people have said, I think your husband needs to see his GP to check out the weight loss but it is possible it is caused by the uncontrolled RA and if he finds the right medication, once he feels a bit better, his appetite hopefully will return.
When I was first diagnosed and put on prednisone my weight went through the roof. 5 years down the track I still struggle to lose weight, but finally it’s starting to come off, really slow…
I echo what everyone else has said about getting his weight loss checked out. It's one of the first questions medical professionals ask as if it's unexplained, it can be a red flag. Hopefully for your husband, his uncontrolled RA is actually the explanation. I'm like J1707 and have/had the opposite problem! When I was on 10mg prednisolone daily for about 18 months, and my RA was totally out of control, I gained over 3 stone! I was constantly hungry on pred, but I hear it affects people differently - well it certainly doesn't seem to have increased your husband's appetite, anyway! Thankfully I've managed to lose the extra steroid weight since starting Baricitinib, but it's taken 2 years of careful eating and a whatever exercise I can manage. Sadly, having RA certainly seems to play havoc with our bodies in general, not just our joints. Best wishes to your husband. x
I can only agree with the other replies go and see a GP and get it checked out. I lost 10kg in a short space of time for no apparent reason but in my case I think it was because I had a persistent infection and kept needing antibiotics which played havoc with my gut and I always seem to lose weight when on prednisone too. If the GP rules out anything else he can send a letter to rheumy consultant and perhaps get him an appointment sooner or at least see if a podiatrist can help his feet. You may never know the cause of the weight loss but if your hubby gets his RA under better control the weight loss will hopefully stop.
He really needs to talk to his doctor about loosing weight. It's more common for people to put weight on as ra gets worse. We are used to eating a certain diet and amount, but do less as because it painful.
I know it's not easy, we all tend to put things of, men are especially bad at checking these things out. It must be playing on his mind but for you as well he needs to see his gp.
Im over 60 with a spinal injury, ra is just a bonas to keep life interesting, I find pain overrules my appetite I forget to eat, its not until I feel ill, I realise I've not eaten all day. It's a great way to keep the weight off but not an ideal situation.
Tell your husband that even I would go and see my gp if I started to loose a lot of weight.
Actually, I've always been underweight my entire life and once I began my RA journey my weight skyrocketed. PREDNISOLONE = weight gain for sure. In fact, I believe most RA drugs cause weight GAIN. Is he eating a well/balanced diet? I mean, it's possible given everyone is different, that the medications are having an opposite effect on his appetite. Also, you say he was very active before all this so maybe he is losing the muscle mass guys have, making him look even more thin and frail? Talk to his MD. I know there are nutritional drinks and other supplements that can help. I am so sorry. I feel for you and your husband. Yep, it is a very painful disease for the person with it but RA also has a direct effect on the people who love us too. God bless you for sticking by your spouse and being supportive. I think in time he'll adjust because from those I know of with RA their journeys all have these various "ups and downs". Just about 5 years ago I was at my peak weight of 158lbs (even through 2 pregnancies I weighed less)! I was also diabetic, taking Metformin (Metformin made me so, so sick, I just couldn't eat). I lost over 40lbs. My diabetes disappeared very quickly BUT now I have these horrible (what I call, chicken legs). My legs are these bony, thin sticks and there is nothing I can do about it! I am an avid bike rider so you'd think my legs would be bulky but NO. I've lost ALL my "muscle" mass. I swear these RA medications (in the past I've taken very close to everything to try to control my RA including what your husband is now taking) have a direct effect on muscle mass! I took Enbrel (which is the US biosimilar for Benepali) for just about a month and the Enbrel injections didn't help my RA at all. With the Hydroxychloroquine, I had such horrible side effects (nausea, stomach upset, EXTREME dizziness) so that was stopped within just 10 days of starting! BTW, I am currently taking and have been taking Actemra injections for about 4 years and a low steroid "lifer" (I take a daily maintenance dose of 3-4mgs due to being on steroids for 20 years my body won't function without it).
Geez, I am so sorry to hear this. You are a wonderfully supportive spouse for trying to help him and caring so much. I really wish I had more answers for you. I also hope that things get better for you both VERY soon. 🙏
I lost a huge amount of weight because the medication I was on just obliterated my appetite …so I would definitely have a word with his rheumatology nurse…& ask her advice.
Also mention his feet…there are pesky little things called neuromas that make it feel like your socks are creased under your feet & they make walking really painful.
You can have ultra sound guided injections into them, or you can have them removed….unfortunately neither are guaranteed to work 100%…but do speak to your husband’s GP about them….to get a specialist opinion.
Hi Rockky, I also lost loads of weight between the onset of RA and getting stabilised on the meds which took basically a couple of years, this was in the early 80's. I just went off my food and the more weight I lost the less I wanted to eat, even liquid foods was tough, then I started the meds and my appetite returned. Also I couldn't walk far it was as if everything has seized up, but that also got better. I do find that skechers shoes are the best as they have a good soft insole, I wish I had them years ago, I wish your husband all the best wishes and well done to you it does get better but its hard at first just keep positive 💞
thanks am hoping the Benepali kicks in soon, he has lost his appetite and doesn't eat as much as he says he just doesn't enjoy his food like he did. You sound very similar to him.
Yes, I think it was the pain and the worry of it all,just the sight of the food put me off, everything is a bit up and down till the meds start, i had to try quite a few before things started to settle down, wishing you and your husband all the very best 👍
See your gp had the same medication as your husband and I to was losing weight turned out I was atype 2 diabetic.it had never crossed my mind,it's now we'll controlled and weight stablised.
Sadly I could give plenty of hints on gaining weight: prednisolone(steroids) seem to have changed my metabolism to the point where even carb free I maintain the overweight body I’ve begun to resent.
I would speak to your family doctor they are very keen on any weight gain or loss and will send you for blood tests which may explain things. Take care😀
HiWhen I was first diagnosed I lost a lot of weight even though my diet was normal. In fact I could eat anything at all I fancied cakes etc & still lost weight. I was the thinnest I’ve ever been & weighed 8st which at 5ft 8 ins not great. My Consultant said it was because my disease was active & sure enough once meds kicked in & bloods settled my weight returned to my normal. No more 🎂
Having said all that any weight loss should be checked out. Y your GP or Rheumatologist. Please mention it at your next appointment. X
About 15 or so yrs ago I was on Hydroxyq for about a year or so but fortunately recovered from Rheum. I did lose some weight during that time, whether from the HydroQ or not is unclear.
Currently since I got a slightly different version of Rheum about 2 yrs ago I've been prescribed weekly methotrexate (MTX) injections but my weight has not changed. I had been taking steroid until the MTX kicked in. Since I am joint pain free I've been doing vigorous exercise both cardio and strength. I'm afraid I can't offer any other anecdotal information. I'm not familiar with someone taking 3 different meds for Rheum at the same time, but of course I'm not familiar w your husbands condition. In any case best of luck finding out what the problem is and of course in finding a solution.
Added Later:
After reading all the replies that people sent you there appears to be a consensus that untreated inflammation (pain) is likely to be responsible for the weight loss whether through loss of appetite or metabolic change. With that in mind, my weight loss was probably before my medication began to control things.
Losing weight is definitely not a symptom of RA. His calorie intake obviously isnt enough. I would look at what and how much he eats first and if sufficient then go to the GP.Ive lost a tremendous amount of weight. Turned out to be gallstones which were making me feel sick hence i wasnt eating properly.
Im on MTX. Took 4 months before I noticed a change.
I was thinking about posting a very similar question. I've lost a stone since developing RA. I'm a small chap anyway but now down to 8 stone. I'm in my late 50s and haven't been this weight since I was 18.
Each time I see the rheumatologist I get weighed, and height measured, so I assume weight loss is a 'thing' associated with RA?
I've lost weight since starting on methotrexate which I think has suppressed my appetite (which has never been great). I've also lost a lot of muscle from stopping physical activities (due to pain and lack of energy). So that might account for some weight loss.
I think your husband's rheumatology department should be taking much more interest in his weight loss than they currently are.
I agree. We have asked again for another appointment. They rang him today and told him to start taking Co-codamol now for his knee/foot pain. We re-iterated about the weight loss and they don't seem that bothered! It's a joke really.
Although it's been 4 years since diagnosis and the Cellcept is working well for me, I have lost 20 pounds in the last year. My doctors (primary care, rheumatologist and pulmonologist) are not concerned even though I was not really overweight to begin with. I'm 5'2" tall , 72 yo, and now weigh 123. Although I feel fine, my family is concerned about the weight loss. I eat whatever I please i just don't have a big appetite anymore. I think my body is making its own adjustments since I don't move as much as I used to.
Hi. I’d definitely get the GP to check hubby out, as unintended weight loss is a red flag for so many conditions. Even accounting for his loss of appetite, he won’t be burning as many calories due to the foot pain. It’s also unusual to lose weight when taking prednisolone, especially at a dose of 20mg. Pred affects the way sugar is metabolised, it is possible he has developed diabetes due to the steroids. Has he had an hba1c blood test done, which looks at the blood sugar over the last 3 months. Also most surgeries let you self refer to podiatry now, and he would be prioritised due to his RA. Check your surgeries website as often you can print off the form and send off yourself.
I would also phone his rheumatologist and request an urgent review, but I think the GP would be first port of call to rule out other issues. I had dreadful issues with my feet, and after ultrasounds they increased my MTX which settled them down. I had people in their 80s overtaking me, and I was in my mid 50s. Hope you get some answers soon. Keep knocking at those doors. 🤗
He can hardly walk today.Rang couple of days ago and asked for an appointment, they have said 30th August. Told him to take co codamol.Thanks for replying.
I have been told on many occasions that active RA causes weight loss and my weight fluctuates on whether my disease is well controlled, but I also think stress plays a big part in weight loss too. So yes get your husband to talk to GP about weight loss first and then just try to look after yourselves as best you can with RA.
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