Does anyone in this group have any experience with lupus? I was diagnosed with systemic lupus, rheumatoid arthritis, and sjogren's syndrom (all auto-immune diseases) after ds was born in January of this year. It has changed my lifestyle dramatically (can't go out in the sun at all, can't be in much heat, can't stay on my feet for any length of time, tired all the time, painful joints, swelling, etc...). I'm on several medications, one being prednisone and it is making my HUNGRY allllll the time. I'm 5'8" and weigh 219 lbs- so obviously I need to lose weight- but since I've been on this medicine all I can think about is food! I've tried keeping healthy snacks (i.e. carrot sticks, celery, rice cakes, etc...) on hand so that at least when I get the "munchies" I'm not eating horrible stuff- but I'm still gaining weight.

I don't have lupus, but my husband does have ulcerative colitis which is also an auto-immune disorder. He's been on prednisone since July and is currently in the long process of weaning himself off of it. He was tested for rheumatoid arthritis and lupus before they made the ulcerative colitis diagnosis because his illness presented itself with severe joint pain and swelling all over his body (which lasted for several months before he was diagnosed and put on medication). My husband has also struggled with the intense hunger that the prednisone causes (he put on all the weight he lost while he was sick and more in a very short period of time). The inital weight gain was pretty rapid but I'm pretty sure it's slowed dramatically or even stopped for the most part now. Have the doctor's told you how long they anticipate you being on the prednisone? I hope you are able to find some relief soon. As nasty as the side effects are with the prednisone, my husband had significant pain relief and a decrease in the swelling within about 48 hours of taking his first dose. Good luck!

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Stephanie
Mom to: Caleb (8/03), Ian (9/05), & Lucas (11/08)

Yes, the benefits of prednisone are pretty amazing. Whereas before I would wake up and be so swollen that I literally couldn't walk, now I can get up and get the basic housework done while watching the kiddos! I was on 50mg/ day and I'm now all the way down to 10! I'm hoping to get down to 5mg in the next week or so, but I may have to be on that for awhile.

Has your husband found a way to lose any of the weight he gained back? I'm struggling every day with just eating normal portions... when I should probably be eating even less than that!

My husband is down to 10 mg every other day. He started out at 40 mg a day.

He hasn't found a way to lose any of the weight yet but he has gotten it stabilized to the point where he's not gaining consistently. He said he ate a burrito one day - which he compared to eating a football filled with meat - and was hungry a half an hour later.

One thing he did start doing as soon as he was able was exercising again. I think he credits that the most with keeping his weight under control. I'm not sure how much, or if, you are able to exercise (I know that I read that exercise is actually good for people with rheumatoid arthritis, but I'm not sure about lupus), but if you can, that might help in a number of ways (under normal circumstances it can help with appetite suppression, increasing metabolism, and burning calories).

He also said that he tries to control what he eats as much as possible. I can tell by watching him how much he struggles with the Prednisone induced hunger. He lost a lot of weight a number of years before he got sick (went from being overweight to a normal weight) by being very strict about what he ate and exercising every day. He pretty much had to continue that in order to maintain his weight loss. Once he went on the Prednisone it was like he lost the ability to just walk away from food.

I think he's really hoping that once he's totally off the Prednisone (assuming that he is able to totally wean himself off without his symptoms returning) he'll be able to drop a little bit of the weight again.

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Stephanie
Mom to: Caleb (8/03), Ian (9/05), & Lucas (11/08)

When I read the part about him eating the "football filled with meat" burrito and being hungry half an hour later I laughed to myself. I totally understand that feeling. I've been trying to eat small things (like a bowl of cereal, or a nutrition bar) every few hours... we'll see if that works at all.

You might try eating popcorn (I Can't Believe It's Not Butter makes a spray that you can put on plain popcorn - it's low in fat and tasty too - as long as you spray enough on your popcorn ) or drinking more water.

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Stephanie
Mom to: Caleb (8/03), Ian (9/05), & Lucas (11/08)