Help

I was diagnosed with Lupus and then out on Predinisolone. I think I was on this a lot longer than necessary. I has caused me to put on 3.5 stone. The rheumatologist says that I wont lose it and the GP says I will. Recently I was in hospital and they confirmed that I would need a calorie controlled diet to lose weight ( I dont eat very much at all) and exercise. The problem is that I cant exercise because I am still in a flare and am in absolute agony. Added to this I have fibromyalgia and just to top it off I am extremely photosensitive - UV light makes me get a fever and very sick. Any suggestions on how I can help myself? thanks

25 Replies

oldestnewest
  • What about swimming sorry I'm not much help as I'm at very beginning of all this and haven't even been diagnosed x

  • Hi Moira

    I know exactly how you feel. I am in exactly the same boat as you with the weight and although I am no longer on pred, the weight will not shift. I am on a calorie controlled diet and still, even though I do not eat anywhere near my daily allowance I do not shift an ounce. That coupled with my inability to excercise makes me feel 100% worse day to day. I am carrying around far too much weight, that makes me even more lethargic, and the pressure that weight puts on my muscles and joints makes the pain worse and so it goes on.

    Maybe we should start our own side kick of this site and call it Chubby Loopies lol xxxx

  • So many people put on weight while on Predinisolone, especially swelling of the face.

    12 months ago I was in the same situation, my GP was telling me I am obese and I need to do something about my weight; I found that extremely humiliating and insensitive.

    Ironically, my current flare up has gone the opposite direction and now my consultant and GP are talking about sticking a tube in me to give me nutrition to holt the weight loss. Such is living with lupus...

    I believe, on a list of priorities when you are unwell and limited, your weight should be right at the bottom.

  • letslaugh, MandieR and Jarrod thank you so much

    I thought it was just me!!

    letslaugh -I would consider swimming - Ive been told aqua aerobics is quite good. But Im afraid of water haha!! So I think it would take a lot of convincing to get me in there!!

    MandieR - its like your telling me my symptoms!! think I made a mistake in my first comment I am off pred now thank goodness.

    Jarrod - I know, it is disgusting the way we are treated. I went to the physio and he said well you know your weight is causing all of this. I almost cried. It was the NHS that made me this way!!

  • Know exactly how you feel, have put on the same amount of weight as you in a year. What an awful disease Lupus is, that the treatment makes you feel better in one way, only to get you in another equally distressing way. I'm tapering down on pred, silly me thought the weight would just drop off, then I thought if it dropped off quickly I would end up like a bag of wrinkles lol. I feel like a sponge I ask the GP for some diuretics but he wouldn't prescribe them I also ask for a prescription to buy some clothes but no luck there either You really don't know who to believe when it comes to losing weight after steroids, now my GP puts everything down to my weight gain.

  • I LOVE your request for clothes prescription, that's so funny!

  • If you are in a lot of pain I would recommend hydro-therapy. The warmth of the water is really soothing whilst you exercise. I have found it to be the best form of exercise to help me loose weight and better still it doesn't cause me excessive pain. xxx

  • I have managed to control my weight with a strict calorie controlled diet and swimming with a float! The pool that I use is warmer than the council pool. I can't tolerate a cold pool due to reynauds! But I really could do with an appetite suppressant. That would make life easier. I also do stretching hatha yoga a couple times a week.

    I hope this helps.

  • Hi there,

    Your weight will not go down just becasue you've stopped taking prednisolone, however as your doctor said with the right diet and exercise you will lose it for sure. If you are in a flare and in pain you should ask for a referral to a physiotherapist. They will be able to find the most suitable exercises for you. Light form of exercise is recomended for people in flare becasue it alleviates stiffness, improves circulation etc. But if you don't know your body well enough you might end up causing some damage and that will affect your lupus as well.

  • Hello moirareynolds - I want to offer you something positive ....

    I've also gained about 3 stone over the 5 years I've been taking steroids. But now I'm tapering the steroids (4mg a day), and I'm beginning to lose weight. It's slow - but definitely happening. Partly I don' t get that horrid gnawing hunger that the steroids give you anymore, so it is easy to eat less, but the others are right, exercise is also key.

    I swim, but I also walk (which is less tiring) - even though I get burned on days when they claim the UV count is 0. I found some matte factor 100 sunscreen on Amazon and I have a hat with a brim (waterproof, too - which is handy). Some days I can only walk a very short distance (a few hundred yards), but other days I can go a long way. It is a MASSIVE effort to make sure I get a tiny bit of exercise every day - and sometimes i am in too much pain), but I hope that as the weight comes off I might get something vaguely resembling my old body back (the one that swam 6 miles a week, and built kitchens and patios as well as the washing and the shopping etc) ....

    Yes - there are negatives - hats are sweaty, for one. But I'd rather be outside - before lupus I was a very outdoor person and I miss it!

    You can do it! Good luck!

  • Hi all

    Thought it was worth mentioning that Re sun block- you can get it on prescription from GP - i have an annual prescrip pre-payment card- so i am effectively getting it for free!

  • I have had the prescription stuff and it is horrible and greasy (hopefully they give you something nicer!). The stuff I'm buying on Amazon is expensive - but it is matte and sheer and I can still use my camera (VERY important to me) without it getting covered in slime.

  • I must be the odd one out here... my weight has stayed the same all the time I have been on Prednisolone (not that I am complaining!) I had a high dose infusion last week and expected to get the munchies or at least a puffy face... nothing! although I did react by developing a bright red face and neck (not very fetching)

  • I have heard lots of good reports about Slimming World - my son's best friend lost 4.5 stone pretty easily.

    Best thing with exercise is to start really gently, well within your limits, and build up very gradually. If walking for 10 minutes starts to hurt, walk for 5 minutes every day for a week and build up from there and set yourself a long-term goal. Anything you do is better than nothing, but don't be too tough on yourself. And not in the snow and ice!!!

  • Thanks everyone for your comments. Unfortunately 2 months after stopping pred I have lost nothing. My husband and I tried this diet and he lost 3/4 stone!! I lost nothing. Am going to try walking - the sunlight isnt as bad as the flourescent,, halogen and energy efficient lights. But I am struggling as wherever I go the lights are there and they make me physically ill. and my fever goes up to 39.

    Just got to keep going :)

  • I also am on prednisolone And so far my weight has not changed although my face is moon shaped and red I must say that the min I was put on them I joined a local winning by losing class that is run by the NHS and it has an exercise class after the weigh in and discussion I find it really good as I do get days when I want to eat everything in sight .Like you I suffer with painful joints and could not cope with extra weight on my knees. It is 1500 cal a day which seems a lot but she says that we need to eat that amount to increase our metabolic rate I must say I was only eating about 1000 cal before as I was so scared to put on weight As it is run by the NHS the teacher is aware of my meds and lupus so all exercise is tailored to suit me I can rest when I want I don't know what area you are in but this is a great class and not as expensive as weight watchers etc I hope this may help my heart goes out to all who have put on weight with this medication and I am absolutely petrified that I put on weight Take care and please check this class out I also go to a cardiac Pilates class and everyone there has either heart problems or health issues Wish I'd known these classes were available before But I do find them a benefit . Would be interested to know if you have been able to find these in your area. X

  • I have a diet tip: i've been using 'My Fitness Pal' - a free website which u can use online or on iphone etc- u use it to track your calories- it's very easy- my son who is weight training & trying to put on weight introduced me to it, my daughter who is not on a diet used it & discovered that she was not getting enough protein so uses it to check she's getting enough of everything- i didnt use it at 1st as i dont believe in diets (as a lifetime thin person ive never had a problem until the damned Lupus got me!) as everyone seems to moan all the time & their weight yo-yos! In the end i thought i'd just check it out & found out that my 'healthy' low fat & high fibre diet in fact was much too high in carbs & too low in protein- and since i've started using it gradually lost weight- the great thing is that it records everything & you have access to the whole database so once you've entered a meal you can just copy it each day (eg i have same breakfast everyday) or use someone else's entry & adjust the portion to suit you. Hope it makes sense- i think it's much easier to use than explain! Also it tells you if u r getting enough vitamins & iron etc. also when you start it adjusts according to age/ sex/ exercise level/ maintenance or weight loss- as i say it's free & you dont need to go to a class- obviously u dont have the support of classmates but it's great if like me u cant get to a class!

  • I also use this. It is really easy to use.

  • Voutton and Sheilainacton thank you very much. I will look up both of these options. The website seems easy to use and the exercise would never hurt giving it a try!! Yes and like you i have always been thin so Im taking this very badly. I have the moon face and the "6 months pregnant stomach".

    So, will look at the website today and speak to my doctor tomorrow. I thought there was things available on the NHS - may as well use them!!

    thanks again guys :)

  • I also am a member of my fitness plan, it is excellent and seems to be working so far! If you link it with an app called Endomondo sports tracker, it allows you to track what exercise you are able to do when you feel able to do it, in my case gentle walks as currently my body wont allow me to do much more. This is then incorporated into your daily food diary... its very interesting :)

  • Meant to say by the way that I can empathise on all counts (when I look in mirror its like there is a stranger looking back at me). Have been on 4mg pred for many years now as every time they try to take me off it my body goes mad! This has been decreased gradually from 15mg.

    The increase in my weight has been unfortunate, but without them and other medication I probably would not be here now. But it upsets me still, even though i try to rationalize it, and so am ABSOLUTELY determined that I am going to lose some now!!!

  • Hi, In some areas your GP can give you vouchers for weight watchers or Slimming World. I lost weight whilst taking 20mg of Prednisolone because I wanted to look good for a family reunion in Jamaica in 2010. As soon as I got there the weight went on again because I needed to drink a lot and my body just retains the fluid.

    I also use the toning tables and chairs (this lets you exercise without you doing much as the tables and chairs move your body for you) as I can't do physical exercise because of the damage to my lungs from the lupus.

    Diet Chef is also good if you can afford it, they deliver the meals to you and again I went back to my normal dress size in no time (that was because I was also give extra infusion of steroid along with the 20mg so I just blew up to a size and a half).

    The steroid is now down to 10mg and everything looks big on me. I was given Cyclophshamide (chemo) again from October to this January but I decided to take a chance and not have the steroid infusion, so no swelling.

    All the best xx

  • Thanks Maureen

    Will definitely be speaking to my GP tomorrow about the weight watchers as well as the winning by losing programme!! I have to do something - will also take note about how much water im drinking, see if this helps too.

    Will let you all know what GP has to say for herself!! ( I bet it is "lets get you better first") I will not be taking no for an answer

    xx

  • Hi moirareynolds. Reading your post was like reading something I'd written myself. I was on prednisolone for 7 years and my weight ballooned from about 7 and a half stones to 16 and a half stones. I was underweight at the beginning - but definitely overweight by the end. My specialist, worrying about my ever increasing weight, took me of the steroid and started me on azathioprine. At first the weight came off pretty steadily - about a couple of pounds a week. I wasn't really dieting, just eating healthily with a balanced diet and a portion of fruit with every meal. I also drink quite a lot of water - about a litre a day. I cut out a lot of the tea/coffee I was drinking as well. My weight came down to 13 stones but, unfortunately it has stayed there. I might lose a couple of pounds here or there but the following week they are back again. However, I stopped smoking as well and I think the nibbles I began eating when I stopped have added to the weight problems - although I never actually gained weight with the smoking cessation. I also began aqua aerobics - and I am scared of the water as well. What I do is stand at the shallow end with my back to the lane dividing rope. That way I always have something to hold onto if I feel unsafe. I have just signed up with a local slimming club in the hope I can lose at least another 3 stones. I hope your GP listens to you. I know when I put on so much weight I just went into the very depths of depression. I rarely went out and rarely bothered even getting dressed in the morning. I would pull a sweatshirt and jogging pants over my pyjamas and that was me till bedtime! So the weight gain is not a vanity thing - it is a very real part of the illness and needs to be treated like all the other symptoms. It will be good to see how you get on - I wish you all the very best!

  • Thanks Silvermyst and norma52, your comments are great!! ( well I mean in the sense that I am not alone!!)

    I have also stopped smoking and drink decaf and a lot of herbal teas. I am trying with the water thing and wish I could continue (I dont like it haha). Not sure with the swimming thing but will def do the walking!

    Sheilainaction I have the prescription but like maggie find it greasy and do not like it for my face, but like maggie get the one off amazon it is great - looks like foundation so I feel better. I used to wear hats but was given wigs on the NHS which has done wonders for my confidence. It covers almost completely and along with the hydroxychloroquine I dont have to wear gloves.

    Unfortunately UV lights make me physically sick and I sweat as if I had the menopause but I apparently dont!!

    So I have to pace myself whilst I guzzle, hydroxychloroquine, tramadol, pregablin,and many more due to the fact that the steroids weakened my bones and now I need medication to counteract that!!

    Oh and another thing - whilst I was in hospital they referred to me as photophobic!! I was not happy. I am not afraid of UV -it makes me sick!! sigh.....

You may also like...