Weight-loss instead of weight-gain (meds or Weg's?).

[TOBEY32]

I have lost over 20lbs since being diagnosed 02/11. I've managed to gain back 5lbs, but no more wants to stick. I've been uncomfortable with this as I was already slender and I know my face looks gaunt. I have an appetite, never miss a meal. I'm steady at 150lbs, normally 168lbs (+/-).
Anyone else who lost weight?

[delorisdoe]

Unexplained weight loss is a very common symptom. Are you on prednisone? If so maybe you are just different and will not gain while on it.

[Psyborg]

Unexplained weight loss is a very common symptom. Are you on prednisone? If so maybe you are just different and will not gain while on it.

I ended up losing weight on Pred so it does happen sometimes.

[TOBEY32]

Yes, on Pred - 10mg. There might not be anyway around it, but thinking of purchasing some protein/whey powder. Thanks.

[Jack]

The common pattern is to lose weight when you have active disease and also in the early days, but then put it back on with a vengeance once you start to get better and the effects of the Pred become more dominant.

I remember that at first I was quite pleased to be losing weight, but unfortunately I was not looking slim and fit just thin and ill!

[delorisdoe]

I have lost 25 pounds since january due to infections. Unfortunately I am not yet thin.

[Sangye]

You need to figure out why you're losing weight. I know you don't have insurance so I'm not sure what to say. A doctor needs to check your blood work. It could be due to Wegs (disease and/or drugs) but it could also be something more serious. Unexplained weight loss is a red flag.

[Jack]

Sangye is right. If it has not been confirmed that the loss is due to Wegener's it needs investigating. Some things are even more serious!

[renidrag]

I would try to rustle up a few dollars to get that checked out. I know what it is like not to have insurance, check with your Doctor, I am sure they will so something.
Dale

[drz]

This was my experience. Lost 25 pounds before diagnosis and early days of treatment when I was unable to eat. The doctors told me to then eat as much as I could to gain some weight and recover from being malnourished. In a few months I had gain the 25 back plus another 25 I didn't need and boy is it hard to get rid of the excess weight. My pred level is now down to 7 mg and I no longer have pred attacks and seldom need to eat to deal with hypoglycemic episodes like I did at the higher levels. Eating 6-8 snacks a night, one or two every hour or two, to avoid the pred induced hypoglycemic attacks got old real fast and it sure did put on the weight fast. When that didn't work I got glucagon shots or sugar IVs to get BG level up to normal.

When I got fat many people did comment that I looked better but it is hard to enjoy looking like you are 8 months pregnant as many of you here know.

The common pattern is to lose weight when you have active disease and also in the early days, but then put it back on with a vengeance once you start to get better and the effects of the Pred become more dominant.

I remember that at first I was quite pleased to be losing weight, but unfortunately I was not looking slim and fit just thin and ill!