Weight Gain

[Brooke]

I have gained about 30-40 pounds in about 6 months. As soon as I get to lower my steroids, do you guys know any quick weight loss tricks? I'm so frustrated because Summer is right around the corner and I hate looking at my fat face and body in the mirror.
I know it's better to be feeling good and alive than worrying about weight but I am self conscious about my weight anyways.
Would taking a diuretic help?

[Sangye]

What dose of pred are you on? What's the plan for lowering them?

I gained 40lbs in the first 4 months and another 20 have piled on in the 4 yrs since. At one point I lost about 10 lbs. I haven't been able to really exercise since dx so this has been a huge problem. Until a few months ago I could barely function at all. I'm extremely self-conscious about it too. It's pride, but it still hurts to be stuck in a body that doesn't resemble the one I had at all. I feel like someone glued a fat-suit on me.

Diuretics will only pull excess water off. If you're on high-dose pred, retaining water may be an issue. (It sure is for me with even low-dose pred) Ask your doc if a low-dose diuretic can help you and if you use one, be sure you follow the directions carefully. Some pull potassium out of you and you need to replenish it.

Are you able to exercise? You've probably answered that before, but I've forgotten if you did.

[Brooke]

Sangye~
Half of the weight gain is probably my own doing, not eating healthy and not working out. When I feel hungry though, it's like I don't care, just get me some food now! I am able to work out, well actually walking would be about the best thing for me - I just don't do it.
Right now I am on 30 mg pred for a week, then I will go back down to my usual dose of 20 mg. I have to stay on 20 mg until I hear from the ins company and can get started on Rituximab. I suppose the Rituximab will have kick in before they lower it less than 20 mg?

[Sangye]

Given that your Wegs is pretty active, you have to balance how much you can exercise. You don't want to use reserves that you need for healing, but some exercise will help you to heal. You shouldn't exhaust yourself or really work out hard. (Also, pred makes it easy to tear ligaments and tendons, so be careful) If you focus on time and not intensity, you'll help your body without hurting it.

[Col 23]

Hello
I feel the same, had some photos taken today and I am so self conscious about the extra weight. How low do we go on Pred before my face returns to normal. Im still surviving on 25mgof the pred for the last 3 weeks although little bit worried, will find out next week if I can lower further.
Col 23

[Brooke]

I know just how you feel - we had family photos taken in October for our Christmas picture because I knew the closer we got to Christmas, the more and more puffy my face would be and the weight would be adding on. So we have a few family photos from last October/November 2009 that I like. Anything taken after that, equals barf.
My normal dose is 20 mg, I am not sure how much lower it will take to start getting my face to normal. I am sure everyone is a bit different.

[elephant]

Brooke and Col, I feel your pain. I noticed my face lost its moon face when I went down to 10 mg of Prednisone. As far as wanting to eat everything, yep....that was me and at time it was a mode of survival for me. Don't be hard on your self, once the prednisone is lowered you will be able to controll your eating. Last summer I really struggled with food, but I did give in, but I did walk 3-4 times a week for a hour. Hang in there.

[renidrag]

And so do I. As a young lad I was a little on the large size. When I did lose the weight around 18 yrs old, I promised my self I would never get like that again. Hello Prednisone and 60 pounds. That was in January 10. I went off on February 11,10 and have lost 20 pounds and I feel better about myself. Starting to anyway. Debbie says I dont eat enough but I decided to eat to live. I have learned to say no most of the time. Hopefully still dropping. We dont have a scale because Debbie weighs 97 pounds dripping wet. But I can guess pretty well by how I feel. She is also a restaurant quality cook so saying no sometimes just doesn't work.
Dale

[Col 23]

I have my son's wedding coming up in October and I am desperate to loose some weight before then. Even if I dont, I think I can handle the weight but not the moon face. I just hate it. I wish I knew about Wegs before they put me on 80mg first off, I think I would have suggested low dose first and increase as needed. Never again will I submit to high dose first. Does anyone else think thats what we should do. I suppose it depends on how ill we are at the time.
Col 23

[Sangye]

In my case, the 3 days of IV pulse steroids (1,000mg) followed by 60mg and months of taper were necessary to save my life in 2006. My lungs were massively hemorrhaging. If I were in that same situation today, my Wegs doc would do the same course.

However, last summer when my lungs were hemorrhaging, we caught it much sooner. It wasn't necessary to do high-dose pred again. I also knew that I'd become so sensitized to pred that a very low dose (5mg or below) was like taking 10 times that. My doc was okay with me staying on low-dose pred.

The other factor was that I was already on Cellcept. If you flare while on an immunosuppresant, you might only need to switch to a stronger immunosuppresant and not increase the pred to the highest doses. It depends. How's that for a non-answer?