Sticky Blood-Hughes Syndrome Support
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Loosing weight


Does any one find it hard to loose weight?

When I was diagnosed with APS and Sticky blood, I just put on weight, at first I thought it might have been the medication that I was on.

I have now reduced by medication from 24/16 drugs a day and started to work more than I did and reduced what I eat at work as I eat fruit at work rather than snacking on chocolate etc.

I know that I only walk just over mile a day as this is only walking from home to the bus stop and back and walk from the tram stop to the bus home which is a brisk walk and still not loosing any thing.

I have had my Thyroid checked which is OK, having my Cholesterol checked on the 1st of March which is on the same date as my B12 injection.

Is any one having the same issues?

11 Replies

I found that I had to 'kick start' my metabolism after being on different meds - the steroids during pregnancies were a real killer (not that they did any good!).

A low GI diet is recommended for lupus patients so i thought I'd try the South Beach Diet for a Hughes patient. It was great - reduced the headaches because of the stablised blood sugar and I lost ten pounds in two weeks and have kept all the weight off in the four years since. Am still a size 10 :)

If I start to put on weight due to over-indulgence, I simply go on the first stage of the South Beach for a couple of weeks, then follow the other stages for a month or so and it's all back off again. I also do exercise but mainly yoya, simming and walking - nothing too strenuous.

The South Beach even worked for my husbnad when we got married last September - he was panicking about the big day but insisting that no diet worked for his as his body does like to store its weight, but he romped away and lost over a stone in two weeks. And he LIKES his food :)


Hi Kate

Thank you for the comment, I will look into a GI Diet to see what's what.


Hi Stannington

when i had my first stroke had the issue i could not put weight on infact i went down to 6 stone then i had my second stroke and the opposite happenedi gained weight considerable i think the aps or stroke must screw with the metoblic system some where but like you been trying to loose it maybe will give kates idea a go see what happends



Never really noticed any real weight gain. Thanks to family genetics, I've always been a tad overweight.


I have trouble losing weight. I was put on steroids and absolutly piled weight on but now im off them i just cannot lose the weight at all. Most days i ear 2 bowls of special k and nothing else. I dont know if its something to do with fatigue that doesnt allow us to do 'normal' things but i would dearly like to know the answer




Margaret, you probably need to eat more!! - your body thinks it is being starved so will saved all food you eat to fat! - I have gained 2 stone since being ill this time last year, and several doses of steroids now gone from a size 12 to 18 :(((((

With breathlessness and fatigue it's hard, but I am going to look at the South Beach diet Kate mentions above.

The weight also makes me feel depressed, slow and tired :(

Don't know about anyone else, but I crave the carbs :(


i walk every day and now work out on the wii i am diabetic so eat good food but the weight dont go i have lost some inches but that all, i have been fighting to lose weight for years i use to be half the size i am now, did a course on what food to eat and i was eating to much as a potion of chips is only 3 chips and cereals is only a few table spoons, the course was good but i find if i work out i am hungry again

plus i hate the word obese which one doctor i had loved telling me that was and would ask if i was eating for a few people it was only when i changed doctors that there found out i am a diabetic,

i am when the warm weather comes go swimming 3 times a week plus work out on the wii and do my walking as i do wont to lose weight


Please try going off gluten. My doctor firmly believes that anyone with an autoimmune condition should go off wheat, dairy and soy. Take a look at a book called Wheat Belly by Dr William Davis, cardiologist. You may become convinced that gluten has been the culprit all along. Please check it out.


I did Anna Richardson's diet for 2 weeks last summer and lost about 7 lbs in 2 weeks. I found it easy to stick to, but it did cause my INR to fall dramatically, resulting in chest pains, so i am now trying to eat a bit less and move a bit more rather than stick to a strict diet!


Hi there

Sounds like you are doing some good walking. Check with your doctor, however basic principles are food/drink is energy in, exercise is energy out. Perhaps keep a diary of the food and drink you consume and exercise you do for a week and see if it reveals anything.

I used to be a personal trainer and this is the first thing I would get clients to do. Be honest and record all those extra chocolate biscuits and unhealthy snacks that you might be forgetting about!!

Crash or fad diets are not the answer, just cut down on portion sizes, drink more water and the exercise you do will pay off

Spring is coming up which means a lighter diet and more light to get out to do activities.

Hope this helps



I find your question intresting because I was wondering if anyone else had trouble putting on weight. I am 30 with 3 boys and I am at the very bottom of an acceptable bmi for my height. I eat all the time any and everything a please. If I eat light for 1 day ( meaning 3 regular meals and no snacking) I lose on average 2 pounds a day. Being that I only weigh 110 pounds a sickness can make for rapid weightloss!


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