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Discussion Starter · #1 ·
Seeing as some threads have been on the subject of weight gain, I wanted some help on weight LOSS. I waited to see if I managed to put the wait on over the last few weeks, but as I have failed and may still be losing weight I felt I had to start this thread.

I was very thin to start off with - weighing just over 9 stones.

But since my flare a month ago I've lost almost - if not - a stone (approx 13/14lbs) :( Clothes which once fit me perfect now just hang off. Jeans need that little extra strength on the belt.

This is extremely worrying as I eat very well (even though I am a vegetarian).

I eat lots of carbs - pasta, potato's, rice, pizza etc. I also eat snacks (sensibly) to help put weight on. But none of this is helping. I've also cut down on my exercise routine as I feel this may not help in putting on weight.

Has anyone had experience of this kind of weight loss? And can people who have been advised or have any knowledge please give me some tips.

I'm seeing my rhumy next week so will definitely be asking her.
 

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Hi Surferboy,
I lost 30lbs in a couple of months with a bad flare. My weight stablised with treatment for the SLE and has crept up again plus more due to the prednisone.
My sister who also has mild lupus eats like a horse and is a size 8(UKsize)
also loses weight with a mild flare.
I would think once your illness is better controlled your weight will settle.
Have you tried the high energy drinks. They kept me going when it was a real struggle to force anything down.
Take care
 

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weight loss

:) Hi surferboy, sorry to hera about your weight problem, I have the same thing happening to me for quite a while now. I used to be a good size 12-14 then lupus kicked in, the only time I have put weight on in the last 8 years is when I was on prednisilone. In the last 2 years I have been losing a few pounds everytime the lupus is bad, I am now down to a size 6. Believe me I cant understand why people want to be this size. I feel like a walking skeleton even though I can everything that doesnt move!!! I spoke to my Prof about it and he said its the nature of the beast but tht doesnt make me feel any better when im buying age 14 trousers when Im 44.
Sorry for the moan, the meal replacement drinks may work for you, talk to your doc and ask to see a dietician, they might have some tips, they have me eating 6-8 times a day since I saw them last week so heres hoping the pounds pile on.
Try not to let it get you down adn know that you are not alone;)
 

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Surferboy,

You have already got some good advice so far!

One thing thing I did think of is that I'm sure muscle is heavier than fat stores (flesh)! This could be playing a part in your weight loss alongside all the many other causes!

As always it is best to talk to a speicialist though, something to bring up at your next appointment or before If its causes you stress (stress can also cause weight loss).

If you dont like those drink supplements, good old donuts and chocolate bars are a good quick snack sourse to add calories to your diet alongside all the healthy things!

Take care,

Lesley
 

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I went from 9 1/2 stone down to 8 in the space of 6 weeks during my first major flare. That was 7 years ago, and despite lots of pred I've never put it back on. I'm a veggie too, but apart from that I eat what I want when I want to - in the end I gave up trying to put the weight back on, and just used it as an excure to buy a new wardrobe! I still have a tendancy to lose weight when I'm ill, but I try to keep eating because I really don't want to get any skinnier.
 

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From Christmas to about March I was in the worst shape ever and lost 35 pounds (size 14 to 8 - US sizes). Depression kicked in big time and I just didn't feel like eating. I know that's not what you are experiencing, but I just wanted to share what happened to me.

Feel much better now and no longer losing weight, not gaining either. The oddest thing is that foods I used to thoroughly enjoy, either just don't taste right anymore or I don't crave. I do feel much better and sure did enjoy going out and buying new clothes.
 

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Surfer,

Sorry but I do not understand stones, only pounds, yet from your post I can tell you have lost a lot of weight.

How about protein shakes with ice cream??? Just a thought.

I also have a hard time keeping weight on due to no stomach so I can understand your frustration.

I am curious though, why does a lupus flare cause folks to loose weight? Anyone know?
 

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When I first got sick, and was having horrrendous high fevers, I lost over 10 kilograms in three weeks! Now everytime I have a flare, I lose weight, but less than that as my flares are always treated with prednisolone usually iv and I take oral pred everyday for the last 4 years. I am heavier now that I was on average before the lupus but only by about 5-6 kg and I swallow a lot of pred so I'm guessing it's the balance between the pred and the lupus . . . . ...

When I'm in hospital they usually encourage me to snack to replenish myself during flares - and by this they mean eat anything you fancy in addition to your normal meals. I find I re-gain any lost 'illlness' weight after about 2-4 weeks by doing this

Take care
Cathy
 

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Inflammation

Inflammation increases your body's metabolic activity so when inflammation is out of control, your body burns more calories causing weight loss. that is my understanding of it anyway.

Nancy
 

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Inflammation and lack of desire to eat both contribute to weight loss in lupus patients. If the inflammation is in the intestines, then it can be very easy to lose weight just like a Crohn's patient cannot keep weight on with active disease despite eating 3000 or more calories a day.

For you surferboy, I would recommend writing down what you eat, when you eat it, and how much of each thing you eat for at least a week. Then do your best to estimate calories consumed & take this listing to a doctor/dietician. I would be willing to guess that you are simply consuming fewer calories than you need but this is the only way you and your doctor would know for sure. The average man needs about 2500 calories a day, and more if there is a lot of exercise.

For weight gain, in is imperative to eat 5-6 midsize meals a day, 500 calories or more at a sitting. You will feel like you are eating all the time, and may very well need to eat when you are not even hungry, but this is really the best way to put weight back on.
 

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Discussion Starter · #11 ·
Wow! I thought I was the only one with weight loss.

In terms of having predisalone to gain weight... would this be a good idea? Or are there way to many other side effects? Again, something I'll be discussing with my rhumy next week but just wanted to hear your views also.

I can't seem to understand at all as my appetite has gone through the roof. It used to be very high when I was fit and healthy, but now I get hungry all the time.

Greenhaggis, you are right in a way about the muscle loss. I have lost A LOT :( I did try to do some weights but felt some muscle pain and thought that what would normally be "good muscle pain" may be detrimental in Lupus terms. Also, I felt I may have had some inflammation in the elbow joint of my right arm so thought it best not to go any further.
 

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Hello Surferboy

Maia has pipped me to the post :)

You must keep a record of what you are eating.
You might be interested to know that a weight loss of more than 10% is unusual. ( Dr Wallace) It is a serious issue as you say elsewhere and I hope your rheumy doesn't brush you off. Although she might not be the right person to deal with it, she could point you in the right direction.
There are several possible reasons for excessive weight loss that a GP would usually deal with in the UK. Malabsorption, diabetes, hyperthyroidism for example.
I am not at all sure about your logic in giving up your exercise programme although that would depend on how demanding it was and what other exercise you are taking. Soem regualr gentle exercise or swimming is very important if only to keep muscle tone.

Let us know how you get on.

Clare
 

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Discussion Starter · #13 ·
Hi Clare, I only gave up pushing weights due to the pressure it may put on my joints, which I think may still be slightly inflamed right now :(

I did go swimming last week, and football :)

But as my cousins wedding is next week, and then I'm going surfing in Ireland, I really don't want to take any risks of getting another major flare so am not going to do anything sporty (apart from Surfing in Ireland) till I get back from Ireland.

Here's to a positive meeting with my Rhumy next week where she'll give me some good news and be able to address some of my issues :)
 

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Hi Surferboy,

Clare hit on a good idea. Get your thyroid checked. When mine was out of control my weight dropped no matter how much I ate. I also had heart palpitations that caused chest pain. It is worth looking into.

Take care,
Lazylegs
 

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Hi Surferboy,

When I get upset, nervous or worried about things, I seem to loose weight without even trying. Even getting stressed out my weight seems to drop.

Could this be happening to you? I have learned to take one day at a time and not look into the future. I know that is hard when having a chronic illness. (((hugs))) No one knows the future and thinking about the what if's only causes me stress.

Take care and I hope you get to feeling better soon.

Lyn


 

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Surferboy
Sorry to hear of your problem.
I can not say what is causing your problem I can only relay personal experience.
Many times when we feel bad we will eat less, we just do not feel hungery at all. This can cause wieght loss. But there is other possible answers as well.
A few years ago my wife who was already small US Size 1 started to loose wieght. Doctors and dieticians spoke to her and all said she was doing everything correct in her diet. Low fat, very very low fat.
She started to do this after a Heart Attack they all said it was the correct thing for her to do.
This was not the case at all. She ended up in the hospital and on life support. Her wieght went to about 70 pounds.
After many many tests it was finally discovered that she was seroiusly lacking many of the protiens that are needed in our blood. The low fat diet she was eatting was also very low in protien and starved her body of the protien it needed and took it where it could get it. This was from her own muscle tissue.
She lost so much muscle she could not walk when done and had to learn to do it again. They also changed her diet alot. Low fat was out and balanced was in. This brought the wieght up and has done wonders for her cholesterol and other tests as well.

I would talk to the doctor, look very serious at what you eat and what it may lack that the body needs. If you can get the doctor to run a complete set of blood tests to see that all levels are where they may need to be it may help.
After this is done a dietician may be able to help you to be able to be a veggy and also get everything that is needed.
 

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HI

About using prednisolone for weight gain-Your suspicion about side effects is the right one. Absolutely no way do you want to use this med for weight gain, unless the weight loss was caused by malabsorbtion from GI inflamation, or if it is necessary to get other lupus symptoms under control. Pred weight gain is partly water retention, and partly fat gain, neither of which helps us look or feel healthier.

The side effects can include muscle wasting, thin skin and loss of bone density, again all of which you don't need.

Sometimes pred is needed to get us well again, even to save lives, so it is great that it is available when needed, but the side effects are serious, and using it for cosmeticpurposes (ie thinking you're too thin without actually being in medical problems from the weight loss) is out of the question.

All the best at your next appointment.

X C X
 

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Just thought I'd add my experinces
I’m 5 foot 6 and just under 7 stone my rheumy reckons my illness is under as good a control as possible :) but I can't gain the weight I lost when I first became ill (i used to be 9 ish stone) :( -he doesn't seem excessively concerned given he's done all the other tests for possible causes which have come back clear and he has looked at my diet diary.... but i can't help but wonder where is what i'm putting in going???????? i'm eating so many puds with custard, chocccies, biscuits etc i feel positively gross sometimes!!!:rotfl:


love Rachel
 
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