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steroids have made me gain weight!!

Help, my steroids have made me gain weight! doctor says its normal and happens to anyone who takes them for long periods of time, before hand i was an 8 and a half stone skinny minnie and now i'm 11 stone!

any advice how to shift the wieght, i'm a vegetarian and lactose intollerant any advice would be great

7 Replies
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sorry I dont have any answers as I am one of the very few who did not gain any wait at all, even when I was on 40mg for 2 years solid, no-one knew why, but I am sorry it has happened to you.

Hope you get some answers.

Take care

Snowy

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Hi Wendy,

I'm really sorry to hear that you have gained weight on your steroids - it is a very common problem but I know that doesn't make it any easier to deal with. I think it's easy to underestimate the impact that this can have on us, both psychologically in terms of self-esteem, body image and so on, and physically, in terms of the increased effort needed to get about the place, and thus worsening breathlessness, as well as the increased risk of diabetes, heart disease, arthritis and other weight-associated problems. I have put on a considerable amount of weight, several stones, over the 12 years or so that I have been taking oral steroids (I have not taken them continuously for 12 years but certainly have been more on them than off them). I now have steroid-induced diabetes, high blood pressure and joint problems, some of which are due to the steroids per se rather than the weight gain, but all of which would be better controlled, if not gone, if I were not overweight.

The reasons for gaining weight on steroids are several. Steroids do of course increase appetite - the dreaded 'pred munchies' - and from my experience, they tend to make you crave unhealthy foods that you perhaps normally wouldn't be much attracted to. I find that my will-power is a lot less when I am on steroids. I think also if you are feeling unwell and sorry for yourself that can also make it difficult to resist! I also find that steroids tend to make me want to eat at odd times - the 3am snack food cravings! - and this can also be hard to resist.

Steroids also change the way that your body deals with calories. Taking steroids is essentially like having your body permanently in a state of 'high alert' - your body's own natural steroids are part of its stress response. Because your body thinks it is preparing for stressful times, it will be predisposed to laying down fat around your abdomen, as an energy source for the future. This is one of the reasons why we get the characteristic big belly and relatively more skinny arms and legs.

Steroids also cause some water retention by affecting the way the kidneys get rid of water. This effect is not particularly pronounced with prednisolone, although it can vary from person to person, but is more pronounced with hydrocortisone. I certainly find I am very puffy after a few days on IV hydrocort! This effect is probably only responsible for a few of those extra pounds, and once you stop taking pred or reduce the dose, you should pee out the extra fluid within a day or so.

Lastly, of course, there is the effect of having poorly controlled asthma. I know many of us struggle with being able to do much in the way of exercise. A small amount of exercise can make quite a difference, so even if you don't perceive that you have reduced your exercise levels, little things like having to take the lift rather than the stairs can all contribute to using fewer calories during the day and gaining weight. Also, when you are using all your emotional energy to deal with the effects of having a chronic illness, it can be really hard to focus on making sensible choices food-wise!

The good news is that it's not impossible to lose weight whilst on pred. It is more difficult, and it does require a lot of hard work, and preferably, a lot of support from friends, family and your doctor. I certainly have managed to lose significant amounts of weight, even whilst on quite high doses of pred, in the past, by a variety of strategies.

The first thing to look at is whether your pred dose can be reduced at all. Obviously, this can only be done in conjunction with your doctor. Even a reduction of 5mg will help to make weight loss easier. If you are on a high dose of pred and have not had any success in reducing, your consultant may wish to consider trying a steroid sparing agent such as methotrexate, ciclosporin or azathioprine. This is a big topic, and we have discussed it on here in the past, so I will not go into more detail now other than to say that this is not something that should be considered lightly, but it may be an option if you are getting significant steroid side effects.

There is no especial trick to weight loss whilst on steroids - the basic principles are much the same as any weight loss regimen. The aim is obviously to take in fewer calories than you are burning, in the context of a healthy balanced diet. In the past I have had success with diet plans such as Weight Watchers as well as less strict healthy eating plans. The exact details probably do not matter very much except from the point of view of finding something that fits in with your tastes and life-style - you are of course more likely to stick to a regimen that suits you. Personally, I find that a low fat, low Glycaemic Index diet (ie one that is made up of complex carbohydrates that release sugar slowly into your bloodstream) seems to be good for me from a diabetes point of view, leading to more stable sugars, and also seems to help with reducing food cravings. It is an individual thing, though, and everyone has their own favoured way of reducing the calories.

Keeping a food diary and calorie counting (or points counting, in the case of regimens like Weight Watchers) can be very helpful, as it is easy to eat more than you realise from day to day. Counting everything you eat can be very valuable in identifying easy ways to reduce calories. For example, until I kept a food diary I was not aware that I take in around 400 calories a day in the form of milk! I have to say that I don't now keep a food diary on a day-to-day basis, because I find it very irritating and intrusive to be weighing and documenting everything I eat, but as an initial 'screening' of what I am eating and a way of kick-starting a diet plan, I find it very useful.

Joining a group like Weight Watchers can also be very helpful from a psychological support point of view. Studies have shown that people who lose weight as part of a group tend to lose more and keep it off better than those who try to go it alone. The idea may sound very intimidating, but these groups are usually very friendly and relaxed and can be really beneficial. Contrary to reputation, most groups don't involve public weighing and declaration of the amount of weight loss or otherwise; the groups that I have been to invariably involved a private weigh-in in a corner of the room, with no obligation to disclose your weight to anyone but the group leader! If you do go to a group, it's worth making the leader aware of the fact that you are on steroids and have health issues, as they will make allowances for the fact that you may not lose weight as fast as someone who is not on steroids. Again, it is a highly individual thing, but I found that aiming for weight loss of perhaps 1/2 a pound a week, rather than the 1 - 2 pounds that everyone else anticipated, was a realistic target. It will take a while, though, for you to find what's realistic for you. The important thing is that it is your personal goal - you are not aiming to beat or compete with others. Studies have shown that slow weight loss is more healthy than rapid weight loss, and more likely to stay off. Take the long view, and look at what weight you would like to be this time next year, rather than this time next month.

If you are unsure which diet or healthy eating plan would suit you best, do go and see your GP and discuss the issue (of course, anyone starting a new diet or exercise regimen should discuss it with their doctor first, anyway). Your GP may be able to advise you, or they may decide to refer you to a dietitian for further advice.

Exercise is another important factor in weight loss; it is not impossible to lose weight without increasing your activity levels, but it is much more difficult. Of course, exercise is something that can be really hard when you are struggling with uncontrolled asthma. There are things that can be done, though - it's important not to dismiss exercise out of hand.

It's important to remember that any increase in activity will help. It is easy, especially if you are thinking back to days when you could perhaps do more, to dismiss low levels of exercise as stupid and pointless. I find that I struggle to take myself seriously doing the very gentle exercises that my physio has given me, if I think back to 10 years ago when I could climb a mountain with a 4 stone pack on my back! Again, though, the important thing is not to compare yourself to others, or to the levels that you could perhaps achieve in the past, but to value every form of exercise in itself. Every little bit of extra activity helps. If you can just climb a flight of stairs one more time a day than you currently do, that is worth doing. Almost everyone, whatever the level of their lung disease and general state of health and fitness, can do *some* exercise - even if it may not be what you would think of as exercise, it will still be beneficial to both weight loss and general health.

There are, of course, many different forms of exercise you can try. Of course, you should consult your doctor before starting a new exercise programme. If you are severely limited by breathlessness or other health problems, you may like to ask your GP to refer you to a physiotherapist or a pulmonary rehab programme, so that you can have an exercise plan drawn up specifically for you, that caters to your problems and strengths. Otherwise, most gyms offer a service where they will tailor an exercise regimen to you - I have tried this at several gyms in the past, when I was less severely affected but still had significant problems with exercise-induced asthma, and I have found that most gym instructors are very good at understanding the limitations imposed by the condition and tailoring a regimen to account for them. Exercise videos at home are also very useful, as they allow you to work at your own pace, take a break when needed, and of course have access to medication when you need it without feeling self-conscious. Yoga and pilates are also good as gentle but effective exercise, and again can be very much tailored to your own requirements. Swimming is also good - many people who are really unable to do very much at all in the way of exercise find that they can swim a bit.

For people who are very overweight, there are other strategies that your GP may be able to help you consider (clearly, at 11 stone, you are not very overweight, Wendy, but I include these things for the benefit of others and for completeness).

Orlistat (Xenical) is a drug which reduces absorption of dietary fat from the gut. It is licensed for use in patients with a BMI of greater than 30, or greater than 27 in the presence of obesity-associated conditions such as diabetes, in whom supervised diet and exercise have failed to produce significant weight loss. The side effects can be unpleasant, and relate to the fact that fat is passing through the gut rather than being absorbed - so people can suffer from diarrhoea, stomach cramps, flatulence and even oily leakage from the back passage. There is also a danger of becoming deficient in certain fat-soluble vitamins. The weight loss effect may be largely due to the side effects acting as a deterrent to eating high fat meals, rather than the effect on absorption.

Sibutramine (Reductil) is a drug which acts on the brain to reduce appetite. It can be useful in people who find it very difficult to reduce their intake, but it does have very significant side effects, including palpitations and high blood pressure. Most people with severe asthma would probably be unable to take it, as they will already be on high doses of beta-agonist, which will of course cause palpitations themselves.

Lastly, weight loss surgery can be helpful. Gastric banding is probably the most popular procedure - it involves putting a removable band over the stomach, which limits the size of the stomach. It can be done laproscopically (by key-hole surgery) and is usually fairly well tolerated, although of course any form of surgery has risks, especially in someone with lung disease. There are other procedures that are done, including gastric bypass, which is a bigger operation which involves re-plumbing the gut so that food bypasses part of it, and thus is absorbed less well. These operations work partly by reducing the size of the stomach so that you cannot physically eat as much, and, in the case of gastric bypass, by reducing absorption of calories. They do also seem to have some, as yet poorly understood, effect on appetite and the feeling of fullness. These procedures are not done lightly and have significant risks and side effects, but they can be life-saving in severe obesity.

In summary, please do not give up hope of losing weight! It is difficult, when on pred and limited in what you can do physically, but it is not impossible. You're not alone in struggling with this, so there is plenty of support available. Do let us know how you get on, if you can.

Take care all

Em H

Reply

Hello Wendy... I sympathise... and totally know what you mean.

What EmilyH says is true... but if like me...there are other physical restrictions that do not allow/permit an ACTIVE life it is very hard.

I am tall and WAS what is called Voluptuous...(had curves) not Obese (blob) as now! ... but slowly I am learning to not only accept my size but see past it and even like myself again.

Sorry I have no real answers but try to look at the bright side... if the Preds... keep your Asthma controlled ... what does it matter if there is a few extra pounds to like !!

Hugs from the Orkney Isles

Susy

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thanks for the advice everyone, not on pred atm as i got to the point where it was hard to get me off it and it was makin me miserable while on it. so i'm on high dose inhaled steroids.

mums helpin me follow the slimming world plan, and tackling my biggest issue, i rarely eat and when i do, its fatty sugary things that my body stores, due to starvation mode and also the fact my body is on high alert.

any ideas on appetite boosing as because ive been really poorly lately, ive just not wanted to eat properly. i go through periods of not eating anything and my weight plummets to 9 stone, then i'll have a month of eating everything in sight, how can i combat this and stop yo-yoing

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Emily, thank you for your post. I was particularly interested in the bit about the characteristically big belly. I will show that to my boyfriend who tends to tease me about this even though I am sensetive about it.

I hope you get your weight problems resolved Wendy.

I found going to the gym regularly helped and i took up ice skating a year ago. That helps as it burns loads and loads of calories. Also my legs don't look as skinny and out of proportion now as I have developed muscles and now have quite curvy legs.

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hi wendy

can sympathise with you- have gained 5 stone in about 15 months due to the dreaded pred. As my hubby keeps reminding me tho - do I want to be overweight and be able to breathe or thin and not breathing. It's sometimes hard to keep a perspective tho, as weight is a very emotive topic, especially with all the photos of size zero celebs. I've also for the 1st time in my life got a flabby and big tummy, at least I know the reason for that now, tho my arms and legs are also bloated so I dont' seem to fit the stereotype weight gain areas!

I finally gave in and admitted I needed some additional help, so started Orlistat about 3 weeks ago, and have lost 6lbs so far so am very pleased. Am also nortily reducing my pred - slowly mind, to try to help speed up the weight loss too! Em H is right in that Orlistat makes you lose weight as you're too scared to eat fatty stuff most of the time in case of the side effects! I'm also doing weight watchers, and just following the low fat diet plan.

Yo-yo-ing tends to happen when as you are doing at the moment you starve yourself and then binge eat as you're starving, so the main thing there I would suggest (not medically qualified but have years of dietary experience!!) is to eat little and often, even if you're not hungry, to keep your metabolism ticking over, otherwise when you starve you're metabolism will slow down, making it even worse when you start eating if it's sugary food.

Good luck, and good luck to anyone trying / wanting to lose weight!

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great news, thanks to a regime of non processed foods, loads of water and drasticly cutting down how much sugar goes in to my mouth, i lost 6 pounds this week. although was costified the other day and now on pred so that could slow my progress :)

thank you for all your wonderful advice and support

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