Weight Gain/Loss

[Chapter]

I have read, on different sites, that weight gain or loss is a symptom of Lupus. Are these symptoms before or after treatment. I understand that weight loss could be the result of being ill but why would there be weight gain? I am not talking about prednisone weight.

[Paul_Howard Partner LUPUS UK]

There are a few possible reasons why a lupus patient may gain weight.

1. Salt and water retention associated with kidney disease

2. Decreased exercise due to fatigue/pain leads to less calories being burned off

3. Increased appetite from steroid treatment

[Chapter in reply to Paul_Howard]

Thank you Paul for quick response. When I was first put on Steriods I actually was losing weight (maybe just part of Lupus), I was concerned about high blood sugars I was having so eliminated a lot of carbs from diet. Have not had Steriods for about 14 months, just on Plaquenil, but I am still aware of diet and watch what I eat. Of course I am not as active as I was but but thought I had compensated for that with diet. I do have some issues - blood and protein in urine, which Rheumi feels is not problem - but don't have swelling in ankles. Very frustrated as I have gained 10 pounds in last 4 months and can't seem to get control of it. I guess I should go for another walk, thanks Paul.

[pattismith in reply to Chapter]

Ditto so so annoying and upsetting, l went from 8 stone to 12 stone in less than 4 months ! 2 yrs on and am only down to 11 and a half stone even though l am really careful about my diet and exercise as much my body will allow , which at moment isnt alot !l used to be extremely fit and active pre-lupus , was self employed running 2 of my own business,'s, working 7 days a week and long hours - l loved my job, no-longer able to work , miss it so much, also had to give my 2 wonderful horses away : (

[field]

hi chapter,

Initially when I became ill I lost a tremendous amout of weight, it was very frightening. Over the years since I have had lupus I have gone form a size 12 to a size 16. I noted my weight gain started when I became premenopausal. I also experience extreme fatigued with lupus so my exercise tolorance is very low. The amount I eat has not changed over the years and I do not eat junk foods. so I think it is a combination of premens and lack of activity. I dont know how old your are so the premenopausal might not apply.

[Chapter]

Thank you field. I am 59 and I had a hysterectomy about 8 years ago, kept one ovary which the doctor said would let me get through menopause, instead of crashing after surgery. I have never had any issues with menopause but I am pretty sure it must be done, hey? I eat clean, hardly anything out of a box or can. I do enjoy a glass of red wine (6 oz) with my supper, don't tell me that has to go . I use to be outside a lot, now have to stay in more so that's probably not helping the situation. I will just try being more active I guess. Take care!

[janiceray]

I think its Paul comment 2 as i have put weight on from size 14 to 18+

[roobarb]

Hi Chapter

I experienced weight gain as my lupus worsened over the years despite regular, gentle exercise & care with my diet. My tummy also swelled up like I was pregnant, which was quite alarming. Then I started to get ibs symptoms, yuk!

But like you, the weight dropped off me rapidly when I started low dose steroids. Which seemed surprising after all I had read about the side effects. These days I know I will loose a bit of weight when I'm in a flare. I'm guessing it's because the disease is effecting my body in a different way than it used to. But I half expect to pile the pounds on again for no apparent reason, so can't quite bring myself to throw all my bigger clothes away. I suppose I feel like I am mentally prepared that way.

What an odd disease this is, it seems to change tack constantly & effect different parts of our body in different ways. So we never really know what we are going to have to deal with next. I really hope you can find something that helps with your weight. Keep reading & researching other peoples experiences & hopefully you will come up with something that works for you too.

Very best wishes. X

[Nightjar]

I'm not on any (conventional) medication - but still gone from size 12 to 16 since I was diagnosed 15 years ago. I assume my weight gain is partly to do with being less active and constantly slightly swollen (inside as well) all over - and getting older of course. We have to accept that our bodies do change as we age (I'm 65)! I have a very healthy diet ..and never snack. Something I have noticed though, is that when keeping busy (not necessarily physically) I feel less hungry at mealtimes, so probably put a little more on the plate at inactive times - legs get more swollen too when sitting still too much. Moving about in the house and walking the stairs help a little but I'm hoping to be able to walk more outdoors - though hasn't quite got there ..yet. xxx

[Chapter in reply to Nightjar]

lol, OK nightjar, you are telling me I not only have Lupus but I'm an old lady too! Life is life I guess.

[Nightjar]

That's true Chapter ..hehe. Still - you're not my age ..yet. Some days I feel like I'm 90 and on good days, I look in the mirror and think 'Gosh, I am cured!!' Ah well, they say age is a state of mind anyway. Guess we have to learn to 'live in the moment' - fingers crossed many of them will be 'good days' xxx