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! :sad:

[delorisdoe]

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

[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! :sad:

[julia]

Lost @25 lbs. before and just after dx. (did not have appetite.) 4-5 months into dx. started to gain weight back.
Gained @47lbs in 6 months.

Since lowering pred held steady at that weight then began to slowly lose some of it.
Down about 23lbs. (But I am working at it.) I am at the weight I was before I became sick.(which was not thin.)

Off pred about 1 month.

[RudiK]

I lost 19 lbs, from 187 lbs to 168 lbs, in three weeks before I was diagnosed with WG in late March/early April. After I was diagnosed with WG the doctors put me on 60 mg pred, which brought up my appetite. That caused me to eat every food in sight and caused me to gain back 12 lbs, to 180 lbs, were I want to keep it. I'm now on 10 mg, my appetite is back to normal and I can fairly easy "regulate" my weight. I'm still one the full dose of chemo and anti biotic meds. My kidneys are at 40% and holding, my immune system is still down according to the doc. So far so good.

[gurinbasra]

I lost 10lbs before being diagnosed, then another 5lbs while on 60mg of Pred and on Ctx and I can tell you it was because I was so sick from Weg. I never responded to Ctx so as my Pred kept on getting increased back to 60mg and my face and upper body ballooned, I was back to my normal weight around 135lbs, and remained there. I never had an increase in appetite as the Pred changed my taste buds and nothing tasted good (not even my best friend chocolate!), also with the Weg in full force on the left side of my face and sinus, my tounge on the left side was numb, so I couldn't eat without drooling or biting my mouth and tounge - long story short, food was not something I happily turned to! Now, I'm doing well, and lower my Pred, down to 6mg, I've actually increased my weight to around 138lbs, but I think that's because my body is no longer fighting the Weg, I can taste everything is normal now (back to my one chocolate bar a day), the numbness has almost gone and I'm not really working out now when I think I should be as I'm feeling quite well. It's summer so I need to get active!

[Rini]

I lost a lot of weight, my heart was just working so hard. even sleeping it went double regular pace. i got down to 125, 124. after being diagnosed I gained like 5 lbs back and now I am slowly gaining... I stay about 10 less then when this started tho. I as almost 140 during swimming. I have been on 60 pred for I think 2 weeks and have not gotten the puff yet. I keep thinking it is coming tho.

[Sangye]

The puff usually starts at week 3, when the adrenals shut down. Avoiding salty snacks and sugar will help.

[Rini]

The puff usually starts at week 3, when the adrenals shut down. Avoiding salty snacks and sugar will help.
:( i just did my friends open houses yesterday & had so much bad food...my mom and sister both got the puff bad but they live off diet pepsi. Good to know eating right will help, more incentive to diet. IK Marta mentioned the salt, I will start paying closer attention to the sugar too.

[BrianR]

Every "food" you buy that comes in a package, and every meal from most every restaurant comes loaded with sodium (salt). It is not good for anyone and is especially bad if you are on pred. Check labels for sodium content and buy items with the least. You will be surprised how much sodium some foods you thought were "healthy" have. A Big Mac for example has a whopping 500 plus mgs of sodium but...a pre-made ham and cheese sandwich I found in a convenience store cooler a few weeks back had 1,550 mg! Most people would think the ham and cheese would be far healthier than a Big Mac. I'd eat 2 Big Macs before eating that one sandwich. Label checking is a VERY good habit to get into.

Another pontification from the peanut gallery! (yes,peanut butter has sodium too unless you get the horrible tasting no sodium, no sugar type).

[Rini]

I don't think I will be able to cut it out entirely but maybe cut back some. for some reason I never considered peanut butter for having sodium.

[BrianR]

I don't think I will be able to cut it out entirely but maybe cut back some. for some reason I never considered peanut butter for having sodium.

It would be next to impossible to cut out all sodium nor should you. You need sodium to live, just not TOO much. Moderation is the key.