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? :D

[Col 23]

Believe it or not the non answer works for my brain at the moment. So, Im just trying to get this right. If they up the mtx and kept the pred the same that would be the go. Obviously this is going to largley depend on the seriousness and your right again in that if we can catch symptoms abit earlier it is a better way to go. So once again its really back to monitoring and knowing our bodies and becoming very knowledgable about Wegs. Thanks Sangye
cheers Col 23

[Sangye]

It's impossible to say that just increasing the mtx would be enough for any flare. All flares are different. If we'd caught my current flare when it began, we could have just increased the Cellcept and avoided pred altogether. But it took months to recognize the flare and by that time Cellcept wasn't strong enough to stop it.

But yeah-- you've got the general message: the better we know our bodies and how Wegs affects us, the better off we'll be. We get in the most trouble when we (or our docs) either don't know or don't believe Wegs symptoms.

[elephant]

Yes, I agree with Sangye, it seems like the Rheumy's are more interested in increasing the other immunosuppresant ( cellecpt, methotrexate, Imuran and so forth) instead of the prednisone.
As for a the weight goes...stay away from processed FOODS. Make your own cake and cookie and replace the white flour with wheat pastry flour. Eat food that is close to the ground and tree ...nothing in a box. Frozen veggie and fruit are fine. Make your own smoothie with frozen fruit. I make mine with Frozen strawberries and blueberries and 1/2 banana with 1 cup of light vanilla soy milk. It's delicious!

[Col 23]

Love the smoothie recipe. My favourite is strawberry smoothies and I never have them without fresh strawberries, I use lite milk but I might give the soy a try. I always make my own cakes and biscuits. I will also try the wheat pastry flour. I think I might get back into making my own bread again. I love the new Chia seeds.
Is garlic good for us.
cheers Col 23
By the way the 23 is just my favourite number

[pberggren1]

I was always meaning to ask about the 23.

[elephant]

Garlic is good for us. I eat a little, my husband forbids me to have it ...bad breath.....but I sneak some in...Hee...Hee.

[JanW]

Hey, all you guys worried about photographs: I have to get mine taken for my passport before August. I have a saddle nose. And passport pictures are good for 10 years!!!

[Col 23]

Jan that tops it.
Thats my last word on weight.
Make up will help and a winning smile.
cheers Col 23

[MCC]

I've put on 8 lbs in three months of treatment, which I know isn't too bad, but it's still going up. I hate my moonface most of all- when I look at recent photos of myself it's really strange.

The hunger does get so much better once the dosage is lower though- I was on 50mg to start with and 12.5mg now. I try not to eat big meals because there is no point- I'm never truly full up anyway so instead I've started spreading small amounts of food throughout the day, and snacking on carrots and celery which although doesn't stop me being hungry distracts me.

There is a Wegener's weight loss group on Yahoo I recently joined called Wegeners4weightloss.

[elephant]

Mandy that is great you joined. Once I got down to 10 mg the weight came off. Don't be discourage...keep your chin up.

[coffeelover]

Hello Brooke!
Yes weight gain is a constant frustration and after many ups and downs I think I am finally ready to give up. Not on eating healthy and exercising, but on the worrying about the weight. I do attend Weight Watchers weekly (mainly to support a friend as I do not anticipate losing...but hopefully maintaining) and the past two weeks I have gained less than a pound, but still a gain. That is disheartening!
I had a short (very short) remission and after my set back and now that I am back on track. The weight is really the least of my worries.
I hope you can gain some peace with this disease and its issues. Life is so much better without the worries!
Good luck to you

[Sangye]

My body is so sensitive to pred, I think I could walk by a bottle of it and gain weight at this point. Since I went back on it (4 mg) daily and did rtx infusions in October and March (4 wks each time with 4 hits of 100mg solumedrol), I've gained 14 lbs. I have watched my diet so carefully. My chiropractor says I'm not eating enough. I know I'm not. But if I eat more (of anything, even steamed veggies!) I gain more weight. My metabolism is just a mess from this stupid drug. My thyroid is working fine--hard to believe.

[Cindy M]

I too am disappointed with the weight gain. I find between WG and the weight gain it all really controls my life. I keep hoping that next week will be better. I am finally lowering my preds again, I am going down by 5 mg every week. So I started at 60 mg and now I am at 50 mg and on thursday I will go down to 45 mg. I am hoping that my energy level will increase so that I can at least be a bit more active. Does anyone have any good advise for exercise. I have put on about 60 lbs and it has taken a toll on my lower back so any walking, standing etc and I am in total pain. Even stretching seems to be quite the challenge, I feel pressure in my head and sinus just from reaching or bending over. I really feel like I should be 90 years old.

[elephant]

Cindy start out slow and walk. Walking is the best exercise for you. I loved it when I went down on Prednisone, and I was so happy when I reached 10 mg. Yahoo!

[Nancy]

Hi Cindy, I know that with pts with severe rheumatic issues we always request water therapy. A pool heated to a warm degree and some therapy and extending to continued classes after therapy ends really help with joint issues/myopathies. The water also lessens any potential injuries from impact that you can get from walking or running. Another potential is a reclining bike - this limits the stress to the lower back, no impact and good cardio... I agree with the weight gain thing - not good. I tried a weight specialist - when he discussed the weight and prednisone combo - he said it would be quite difficult... Oh well... Any day above ground is a good day...

[Sangye]

Cindy, I hear ya. Since walking is hurting your back, I don't think that's a good place to start. Nancy's suggestions of pool therapy and stationary bike are what have helped me. A heated therapy pool is not the best for Wegs, though-- it's an inflammatory disease (too much heat). A regular temp pool will not weaken you as much as a hotter therapy pool will. You will not believe what you can do in a pool!! Walk at a depth where the water comes up to your armpits to start-- very easy, water will support your weight. Gradually work up to walking in shallow water. Only walk for 5 minutes at first, then move on to other standing exercises for arms, legs. Do less than you think you can-- you'll be totally wiped out when you get out.

I also have a pedal exerciser which I got at Walmart for $25. Fits under a desk. I can do it even on my weakest days and it helps keep fluid moving in my legs. Even though I do it mostly for circulation, it has strengthened my legs and core muscles, too.

I haven't been able to use the pool for several months but I'm thinking I'll get back to it in another week or so.