Weight gain -is there any stopping it?

I have lupus nephritis and am on 5mgs prednisolone, 50 mgs hydroxychloroquine and 100mgs losartan a day . I recently had my first two infusions of rituximab. It seems the disease itself and all those medications predispose one to weight gain and I've proved that, putting on about 3 stone in the last couple of years. The only advice seems to be to eat a healthy diet (and how many definitions are there of that these days?), don't drink large amounts of alcohol ( what, not even my glass of red wine, reputed to keep Alzheimer's at bay?), and exercise. Yes, I can manage the simpler words but...

I feel despair creeping in, but as I don't see that as a useful feeling, I shall tell it to creep right out again!

However, has anyone any useful, interesting, inspiring, sensible ideas to add to the above?

24 Replies

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  • Alison i put on four stone in four months due to 30mg of steroids,sadly i endd up having surgery for weight loss which i have now lost four stone. So i don't have an answer for you apart from keep active as much as possible,i know how hard that is believe you me.xxxxxx

  • Hi Alison

    I once read that even if you drink only water prednisolone will make you put on weight. I chose not to believe it, I was eating very sensibly and I do not drink alcohol, but it made no difference I still grew, what looks like, a rubber ring around my middle, my face ballooned and generally became chunky.

    Thanks to going on Etanercept I managed to get off steroids but losing the weight gained during those few years is remains a challenge. I still have a smaller lump of blubber around my middle but don't know if it will ever go.

    I think some on here have happier stories to tell about prednisolone but for me, although it kept me moving and pain was under control, the side effects were and are a nightmare.

    Just wish I had been put on biologics sooner and then would not have needed steroids,

    Hope the rituximab allows you to wean off the steroids and then you may be lucky the weight may just fall off. Having said that I have read stories on here that for some people on biologics say they also put on weight ...... It may be that we just can't win!

    Don't despair. You are on the best of treatments.

    Wish you all the best.

    BG

  • The same here re steroids but without them I was bedbound.  Have been on Prednisilone since August last year and tapering since then really .. Very slow taper from 20 to 2.5 and now on 2.5 every other day then end of April to end of May I will take one every third day then finish.  They have caused me to put on 20lbs and looks like all of that is on my tum and bum.  Hate it.  Face went down after got past 5 mgs and I looked like bullfrog before then. Ugh!!  Wish I could have gone on Rituximab sooner.  Anyhow the steroids have kept me moving so have to think of the positives don't we?  x

  • Hi Neonkitty

    Sounds a similar story to mine. I was bed bound, unable to get to the loo by myself, or bend my arms or legs to get clothes on or off.  If the bed was touched I would scream out in pain so steroids were an answer but at such high doses and for so long my body just changed shape without even eating. Methotrexate made me really sick and all I could drink was cold or hot water. It is a cruel disease with, what felt to me, cruel treatments.

    Biologics helped me get off steroids but, like you, it took time and then I was left with a prednisolone generated puffy body, face and neck. It is still a work in progress on my tummy and bottom too! face and neck much better.

    I can remember at the time feeling very lonely and frightened and it helped reading about other people's experiences so I knew it was not just me or something Inhad eaten.

    Hope the taper continues to goes well. You are nearly there. Well done.

    BG

  • Thank you BG it sounds so familiar :-(.  All of it.  Last summer I spent two months in bed .. Or 18/20 hours a day on good days!  At one time I couldn't get down the stairs for ten days.  My husband had to lift and assist me down and out the house for my Rituximsb when a slot was eventually made for me.  Due to the long delay in giving me an infusion appointment for my second round of injections I went so downhill.  Ended up on oral morphine.  So steroids were a Godsend but also an enemy with the weight.  I hope you are alright now.  

  • Hi Neonkitty

    Lots of similarities. Before I was even put forward for biologics, on more than one occasion, I also had to stay upstairs for over a week as I was unable to get down the stairs. When I was able to toilet myself (I can hardly believe I just wrote that ) my husband was able to go back to work. Water and things like fruit were left by the bed if I did get hungry. I was also on oral morphine.

    As I have said before on HU I have always taken everything I was told but it has only since I have been on Enbrel that I have seen a difference and been able to wean off steroids. 

    I am doing ok thank you. I give thanks for every day I can move. I still have little flares but they don't get out of control and go away quite quickly. Normally because I have overdone it! Trying to be sensible and pace myself as we are trying to move to a bungalow. After two years on Enbrel I am only just up to coping with such a major moment. 

    Thanks for replying to my post. It really helps to know that someone out there understands.

    Hope the next fusion is soon and works well.

    Take care

    BG

  •  I can offer is empathy.   I'm also on Rituximab, as well as 25 mg Methotrexate and 7.5mg Prednisilone. I've gained 2.5 stone in as many years.  If this ratio continues ... No, no, it can't!  I have knee replacement surgery on 21 June, so really want to shed at least 10 lbs (1lb per week).  Lack of aerobic exercise doesn't help, but my real problem is grazing on carbohydrates.   

    I've read that keeping a food journal is a good start.  One should record one's emotion as well as the food, the idea being that one becomes more mindful of what one is eating.  I'm starting this TODAY.  

    Breakfast:  Granola, pomegranate seeds, blueberries, low fat Greek yoghurt.

    Redbush tea with s/s milk.   All quite healthy, but too much Granola.  It is more calorific than porridge, so maybe I'll switch to that when this lot is finished.

    The other tip I read is to smell one's food before putting it in one's mouth.  That might help with 80% chocolate as I don't like that smell much.  

    Have you tried the 5:2 fasting regime?  Or the 24 hour one?  I'm just about to research both of these.  

    Maybe we should be weight loss buddies, or maybe you already have one?   Jo

  • Yes I have bought a little book for that very same reason.  ;-)

  • Last year I lost 1  1/2 stone following slimming world. I only stopped going because I was taking a lot of steroids. I have gained some weight and have been on Preds for two month. I know one of the causes is I have been eating wrong things. Slimming world is just healthy eating and you are not hungry.  Take a look and good luck.

    First things first get your disease under control first.

  • Hi - I'm just wanting to say that I relate to the steroid weight gain. Also I'm presently being checked out for Coeliac Disease - another autoimmune disease. As part of this process I'm having to eat foods with gluten everyday. It's making me terribly bloated and bringing a lot of pain in all my joints as well as my abdomen. I was gluten free for the first three years of having RA but then slowly lost track and have been not so vigililent. I lost four stone over three years when I dropped gluten from my diet. Now I've regained at least two.  

    What I've read in various respectable scientific journals is that anyone with an autoimmune disease should strongly consider going gluten free whether or not you have Coeliac's. There is now thought to be a very close link between non Coeliac's gluten intolerence and diseases such as RA and Lupus. I wouldn't think that avoiding gluten in foods could cure our diseases alone but I do believe it helped me a lot and it is my plan to start again properly as soon as testing for Coeliacs is complete. The weight loss alone really helps the joints and going gluten free really helped me with weight loss as well as addressing the IBS-like symptoms brilliantly. 

  • For me it was the steroids that put up my weight. Annoying as over two years with weight watchers I lost 5 stone. I'm only on sulphalazine now having started first infusions of Rituximab last month.  I hope when things improve I can get back to WW and start exercising  again. 

  • Hiya Alison. This is something I've looked into before because I haven't gained significant weight in 4 years on deflazacort taking a low maintenance dose & wondered why when I read some others seem to. I came across this some while ago & I thought it explained how some experience weight gain on steroids & why some people don't, you may find it helpful too. It's from a US site & there was quite a lot of blurb so I've cropped it. It specifies prednisone but the info applies to the corticosteroid group as a whole. 

    "How Corticosteroids Work

    Corticosteroids, natural or synthetic, are a group of chemically-similar hormones that have important functions within the body. Steroids play a role in regulating metabolism, immune function, inflammation and response to stress and injury. Naturally-occurring steroids, like cortisol, are produced by your adrenal glands. Normally, the adrenal glands produce steroids that would be the equivalent of a low dose (about 5 mg) of prednisone daily. When corticosteroid drugs are prescribed at higher doses, they can help control inflammatory diseases.

    How Prednisone Causes Weight Gain

    Not everyone will gain the same amount of weight while on prednisone but most will have some degree of weight gain. Additionally, prednisone can cause a redistribution of fat, especially in the face, abdomen and back of the neck. According to experts at The University of California San Francisco Medical Center (UCSFMC), weight gain associated with prednisone use is typically caused by fluid retention and higher calorie intake due to increased appetite. That's in addition to being less physically active because of pain and other consequences of chronic inflammatory disease. You may think there is nothing you can do about those factors -- fluid retention, increased appetite and decreased physical activity. Think again. Let's consider what the experts recommend to help you manage weight gain from prednisone.

    Managing Fluid Retention

    A low-sodium, high-potassium diet can help control fluid retention. According to UCSFMC, you should not ingest more than 2,000 mg of sodium per day. You can achieve these dietary goals by avoiding high-sodium foods, especially processed foods, while increasing your intake of potassium-rich foods.

    Controlling your appetite

    If increases in appetite have been subtle, you may not even realize this is an issue. Being aware of your increased appetite is the first step. Pay attention to your calorie intake and the nutritional value of the foods you eat. Avoid processed sugars and simple carbohydrates, the so-called empty calories. These are digested quickly and just leave you hungry soon after. Instead, eat small but frequent healthy meals. Some recommend low-calorie, low-fat diets while others pitch low-carb, high-protein diets. Try both recommended courses and see what works for you.

    Increasing physical activity

    Joint pain and other symptoms of inflammatory types of arthritis will make it difficult to exercise and keep activity at a high level. Most patients believe they can't do enough to burn calories. It is important to do something rather than nothing, though. With the advice of your doctor or physical therapist, structure a daily exercise routine that takes into account your abilities. To whatever level is possible, include aerobic exercise and some strength training, which will help burn calories, build strength and slow bone loss. Make an effort each day.

    Hold Yourself Accountable

    Once you establish a diet and exercise regimen that will help you manage your weight, track your daily progress. You can do it by writing in a journal or keeping a chart on your computer. How you track your diet, exercise and weight is up to you, but make sure you do it. Accountability is a major factor that will help you successfully manage your weight while on prednisone."

    I hope some of this helps in some way.

  • Hi, I sympathise, I'm on several drugs plus 10mg Prednisolone a day, since also being diagnosed with type 2 diabetes I've lost 2 stone but, still have more weight to lose. Since being on the steroids I'm constantly hungry & think about food all the time! I've put on 4lbs in as many months. I'm slowly to come of Prednisolone  & hoping it goes ok & that my appetite will go back to "normal"! 

    Jane x

  • HI ALL,

    I am on Lef and sulfrasalazine, I have steroid injections every now and then. when I first was told I has RA and PsA I had 6 weeks of steroid tabs and gained over 4 stone. I was doing a slimming world diet after the 6 weeks and did loose about 1 stone but it took ages. so when I have the injections now I know I will become a beached whale. Talked to my GP who said steroids did not put on weight !!!!!!

    Ah well I jus am thankful when I have good days. I do go swimming 2 times a week and do gym exercises in the pool and this helps but I am old I am border line under active thyroid from blood tests !!!!

  • Weight gain is due to eating too much if you eat less you will not gain weight I keep my weight in check by not eating too much my BMI is 24 I realise normal is between 19 and 25 if I gain weight and I weigh myself everyday, I just eat less for a little while and I am back to normal it is not rocket science anyone can do it.

  • Call a spade a spade! But, have you ever needed steroids for any length of time? I think maybe you'd understand if you had, it is a common problem & not always due to the excessive appetite they can cause, my reply above & others explain.

  • Overweight people seldom admit their weight problem is due to overeating, and will blame almost any thing or anybody! As explained by most of the above replies.

  • Oh please! If you don't believe me take a look on the internet, the side effects of steroids, weight gain is common.

  • Such a sweeping statement may well have the effect of plunging some of us on this forum into the biscuit barrel.

    I remember showing my GP my swollen middle and the swelling on the back of my neck and she laughed! Yes, she said, that is typical of prednisolone, and it will take up to two years to disappear! So I have a little way to go before I think it is there because I ate something dodgy. She never mentioned exercise or diet as she knew that both were fine and I have never been told I am obese or overweight by any Consultant or medical person but all have said the same thing that I have the visible side effects of prednisolone. 

    I am thankful that Enbrel helped me wean off steroids. It has been my best chance of getting some sort of life back.

    Best wishes

    BG

  • So there you go biscuit barrel says it all. I haven't had a biscuit for 10 years

  • I'm pleased for you, but I don't think you get it. Do you not think BG's being the teeniest bit facetious? I hope the rest of her reply gives you a greater understanding how side effects of steroids can affect a person.

  • Thanks for posting the information on steroid side effects. It was very helpful and it will help folks to understand that what is happening to them is a genuine side effect of taking steroids and not to feel bad about it or themselves.

    Best wishes

    BG

    Ps I like the word teeniest.

  • Dear Jointpain

    For some reason your post made me smile. 

    Thank you

    BG

  • Hi everybody, Thank you for all your compassionate comments. Jora, empathy is good and I like the idea of a food journal, but am suspicious of 5/2 diet. I know that if I don't keep a steady energy level, even though I am not diabetic, I can plunge into a depressive black hole. I've never decided whether this is the illness, the medications, simply me, or a combination of all three, but it's a place I will keep out of if I can. Low GL foods is a way forward here I think. Moonie - Slimming World might be a good idea, but you are so right - get the disease under control first. Twichytoes, I have considered the gluten free direction particularly as my daughter is coeliac. But I have been tested fro gluten intolerance and it was negative. Also my homeopath has tested that it is not a factor in my case and she is a good lady. My digestion is very good atm and I'm inclined not to rock the boat. But I will bear it in mind. Birthdaygirl, thank you for taking so much trouble in your reply. I need to look more into the whole business of sodium/potassium balance and its relation to kidney disease and medication and fluid retention. High protein is also suspect with kidney disease, although some indicate the opposite. I simply don't know enough. But yes, accountability is good, as long as I don't use it as a tool to beat myself up with! Jointpain, I hope you have as much success in managing the other aspects of your illness as you clearly have in the matter of your diet.

    Interestingly my homeopath reckons that the medications,though necessary and good are having a somewhat toxic effect on my liver and she has given me remedies to balance that and thinks that may well help the weight problem. If anyone wants to mutter about placebo effects and homeopathy being a con and do I realise that there is nothing of the original substance in the little tablets, feel free to do so.

    So onward and upward. Some food, some exercise, some rest, a lot of staying positive without necessarily denying the negative,  appreciating the world and the good people in it and learning as you go. My favourite quote, from somewhere or another: Be kind, everyone's struggling

     

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