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How to lose weight with lupus?????

6954 Views 13 Replies 13 Participants Last post by  cathomas37
After 6 months moaning about the weight i'd gained with the steriods, I decided to do something about it, so i joined a slimming class. But i'm finding it really hard - i eat all the right things, count up all the points, don't go over the points and one week i lost nothing:( the next lost 2.5 pounds :) but then last night put one back on again :mad: Am i doing something wrong, or could it still be steriods, am still on them, but a hugely reduced dose. or am i just looking for excuses???!!!!:lol: Anyone had the same or similar problem, with tips to share or just to make me feel a bit normal!!!!
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I had already gained 8 kilos too much before I was even diagnosed. I actually gain weight when flaring - go figure. Anyway, with pred etc I gained another two.

No matter what I do food wise my weight doesn't change. It's stable whether I starve myself on salad and carrot sticks or whther I just eat normally including my little piece of chocolate each day. I never pick in between meals and eat pretty healthily but also like good things in life.

The only conclusion I have is that although I am not flaring right now the pred and the lack of exercise are stopping me from losing weight. I'd say especially the latter as I'm one of the lucky ones who didn't gain too much from pred itself.

I haven't found a solution yet as I am still far from exercise ready and can't stop the pred because then I have problems breathing and depsite hating the extra weight, it suddenly seems less important compared to breathing.

sorry, I'm not a lot of help am I?
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My diet is very restricted due to allergies/intolerances. By rights I should weigh next to nothing, but, although I don't really put weight on, I find it impossible to lose any. I can only put this down to the steriods :( .
hopefully one day I will be able to get of them, until then I've given up trying to lose weight as it just made me miserable.

Take care

Elle x
Hi Alisonr i am the same with my weight i went from a ten then twelve then fourteen now sixteen.and i am not on steroids i put it on when i started the paliquine i took out a member ship out in our local center.To use the gym and sauna i have 5 weeks to get it of or i will have to go out and buy new holiday clothes so fingers crossed that i can get some of Elisabeth
Hi Alison,
Glad you posted that. Its not just me then. Ive been on steroids for over 2 years now and am now only on 2.5 mg so thought the weight might start to drop off.
I diet all the time. Not saying I always stick to it perfectly but I eat healthily and try not to eat the fattening unhealthy things.
Ive done weight watchers loads of times and am now trying the slimming world way. Ive not really lost any of the 2 stone Ive put on while being on the Prednisilone.
It just wont seem to shift now. I am on the menopause too so I suppose that doesnt help either.
Its soul destroying isnt it when you get on the scales. Oh well.. Ill just keep on trying.
Hope you conqueor it and if you find any miracle way please let me know lol.
Good Luck.
Sal x
Dear Girls, I am too heavy too and have just had to up my current Pred. to 30mgms. Luckily I am at Tommies soon. I saw a Dietician last year, she looked at what I eat and the exercise I try to take and wrote to the Dr. saying I would not be likely to lose it and should not eat less. I am not huge but definitely too big.Especially as I am a bit short with size 3 feet.
x Lola
i didnt know that plaquenil can cause weight gain. no wonder i cant loose any weight. i have been in a struggle to loose weight for a couple of months myself and so far i have lost only 7 pds.:sad: :sad:

its so frustrating that i feel like eating away and not caring anymore.

i know exactly how you feel alisonr. i have been exercising and trying to eat the right foods but when the scale doesnt budge, it makes me go mad.:( :(

i am not on steroids. the only thing i take is the plaquenil. i really wonder if its because of that that i cant loose it.

good luck alisonr.:)
Hi Alison,

There is no perfect diet. The best thing to do is eat a healthy diet and exercise. I found using a salad plate instead of a dinner plate forced me to take smaller portions of food. Drinking water prior to eating helps me feel full. The slower you eat will give your stomach time to signal the brain that you are full. Don't eat while watching television. When you do you don't even notice what or how much you have eaten. Don't buy junk food, if it is in the house you will eat it. Once a week treat yourself to something you love.

When you are in pain it is difficult to exercise. Listen to your body and start slowly. If you overdo you will be in pain and less likely to exercise. Choose something you think you will enjoy and doesn't stress the joints. Walking is my primary exercise and I supplement it with yoga. When that is impossible I do leg lifts and tummy tightening while laying in bed. I always thought videos were the way to go but for me it really isn't. Joining a class and making friends make me want to go and exercise.

Once you lower your steroid dosage it takes time for the pounds to shed away. Hide the scale. You will know by your clothing if you are loosing weight or not.

Good luck,
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I simply don't believe Plaquenil causes the weight gain. It's more the reduction in general activity and deliberate exercise caused by the symptoms and change in lifestyle that often occurs after diagnosis with for example the greater need to rest.


I found it very intersting reading this thread because in the last year I have put on 1 stone and have been on steroids since last May in differing doses.

All in all, since I became ill, 10 years ago (dx only 3 years ago though) I have gone from a size 10 to a size 14/16 and put on over 3 stone in weight which I mentally cannot take so much so that I have had to have counselling about it from my GP. Only 3 years ago before they put me on the plaquinel I was 9st6lb and now Im over 13 stone!

I agree that us lupies are not as active as others but I also feel from my own experiences are that it is something to do with the medication I take that keeps me "fat". I do pilates (on a machine which is more gentle on the joints) most days so I do have good muscle tone now and although I do have a major problem with my heart at the moment which makes me breathless for some reason I would say I am quite fit. Im not 100% sure which drug is causing the problem but I would point my finger at the pred being one of the culprits.

I have also been a patient in St Thomas Pain Management Input Clinic 2 years ago (4 weeks inpatient residential) which was of great benefit to me and ultimately in turn, my family.

I've just had to learn now to accept that this is the way I am for the time being (although it has taken quite some time) and that one day, maybe, I may lose this excess water/fat or whatever it is. My Counseller taught me to do things to make myself feel better about myself; I give myself manicures (my nails are the best part of my body lol!!! and people are very envious of them ) shame they dont want the lupus as well (lol), I enjoy reading in the shady garden and watching the birds (simple things please me now) and giving myself "strokes" to make myself feel better. "Strokes" are positive thoughts/actions which make me feel good and this seems to be working on my tired fed up brain.

Before I was dx with sle etc, I had major thyroid problems and was on steroids back then. I know I went up to a 14 (probably around 12 stone) and did get back to my 9.12stones after I had been off the steroids for a while. Because I was undx with sle but symptomatic, I did not do much exercise at all or adjusted my diet, the weight just came down by itself. So I hope and pray that when I finally get off them this time round things will sort themselves out and my body will go back to a more normal size for me (whatever normal is now!).

Well that's enough from me for now. I hope this has been of help.

I know that everyone who are on steroids gets both the good the bad and the ugly and I wish you all good wishes.

Julia x:)
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Hi All,

Ah, the great weight debate (did you see what I did there with my rhyming?!)

I got diagnosed 7 years ago & went onto 20mgs Pred which bumped my weight from 8.5 stone to 12.5 stone in 6 months! About a year later I went to Weight Watchers and lost almost a stone but having had a nasty flare over the last 2 years involving knee surgery (both knees) and lung problems I gave up the exercise and piled it all back on.

Through positive thinking and sheer determination I have returned to WW and have lost 4.5 lbs which isn't a huge amount but I think if I lose it slowly it'll stay off - I now have smaller portions as well as a better diet. I have also returned to the gym and swimming which has been difficult as I used to be a real gym bunny and now I have to take it easy. I also have my pedometer and am trying to get to my 10,000 steps a day.

I have also reduced my steroids to 8mgs per day and so far so good. I don't think I'll ever be as slim as I was but I am hoping for a 'healthier' weight for my poor little 5'2 frame!

Fingers crossed I'll get there, I'm heading in the right direction at least....

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I'm on 40 mg of steroids right now, going down 10 mg each week. But I only gain it in my face and my belly, so I look pregnant. I hate it, but no matter how I eat, the belly won't go away. And the rest of my body is skinny. I always have the moonface, because I usually stay at a maintenece dosage of 10 mg/steroid for the past few years. It's just recently I had to up the pred to 60. With this disease, you really have to sacrifice your vanity....:sad:
Thank you for all your support and tips, i'll keep trying and hopefully will get somewhere - maybe my expectations are too high!! Need to be happy with what i've got!!! :)
How to lose weight with lupus???

Hello everyone,

Losing weight is such a pain, just like the rest of lupus. I have gained so much weight and tried so many diets, all to no avail. I have starved myself, drank water until I thought I'd over dose, eaten nothing but salads, and nothing seems to work. Now, I just eat healthy, exercise when I can, and pray I don't get too heavy I won't be able to walk on these weak legs! Seriously, it's just one of many other things to deal with, so don't feel badly if you're not having luck losing weight. My doctor says its the prednisone, cursed prednisone...can't live with it, can't live without it! I was diagnosed with SLE in 1998 and I have been on prednisone ever since then. Can't seem to get off of it, guess it like me.

Good luck to everyone, and let's keep our heads up HIGH.
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