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ziggy
11-18-2010, 06:51 PM
Since being on Prednisone and Imurel I have put on over a stone in weight. Although I'm on a low dose now the weight wont shift. Will it ever go?:sad:

Hammy8241
11-18-2010, 08:26 PM
All just part of the fun i'm afraid. I put on 30lb when taking 40mg pd, and only now I'm on 15mg can I shift any of it and thats with careful eating and exercise and listening to the WG - but it is real slow. I am also certain that if i breath in whilst passing a bakers, it would all go back on...................ummmmm doughnuts!

Short answer: yes, the lower the pred, the more chance you have..... but it won't roll of like it rolled on.

andrew
11-18-2010, 08:59 PM
Hey zig. It goes very slowly but it can come off. As to when and how it comes off, well that's entirely up to you :) On one side it's about how the Pred affects you personally. For example I didn't lose my moon face (some say I still have it but they're just jealous) and some weight until well after I stopped the Pred. Others a bit before they stop. On the other side it's diet and (if you can) exercise. Time unfortunately is king.

elephant
11-18-2010, 10:49 PM
My weight came off once I reached 10 mg of Prednisone.

Sheena
11-18-2010, 11:25 PM
I have been on Pred for 3 years. I started on 75mg and put on 16kg in just over a month, I could literally feel my skin ripping as i put on the weight!!! I have stretch marks that are just huge and I haven't even had a baby yet. Since that time my weight has not shifted. there has been absolutely no change for 3 years in my weight and I am down to 5mg of Pred. I have been on 5mg for about a year and a half. I remember the Dr's telling me that it would go on so easily but would be so hard to shift - so true.

I think I actually found this one of the hardest things to deal with. By the sounds of what people are saying above it really is different for everyone. I wish it would come off easier.

If anyone has some tips I am all ears!!!!

Sangye
11-19-2010, 01:51 AM
Sheena, same here. I didn't know about the increased appetite being caused by pred and so I just ate as I wanted. I gained 40lbs in 4 months. I've since put on another 20 due to more pred and 4.5 yrs of inactivity. I was off pred for 2.5 yrs and my weight didn't budge, even though I was eating very little.

I am absolutely miserable with my body like this. It's by far the hardest part of Wegs for me. I can't stand looking like this, and I really can't stand the restrictions. I can't even get a good forward stretch because my stomach is in the way! I feel like I'm trapped in a Hollywood fat suit. The worst part is that I'm quite limited in my ability to exercise, so there's no budging it. Ironically, last night I actually dreamed I was watching a video of me at my pre-Wegs weight and was feeling quite depressed.

Please, don't anyone tell me I should love myself at this weight, that it's cute to be pudgy, etc.... I will probably not react well to hearing it.

elephant
11-19-2010, 03:01 AM
I know what you mean, you have to be comfortable at the weight that you want to be. Even gaining 10-15 lbs for me was alot to bear, plus I'm short.

Brooke
11-19-2010, 03:32 AM
Sangye - I know exactly how you feel. Except I do have the energy and am feeling well enough to excercise, just looking for some motivation.

Sangye
11-19-2010, 03:52 AM
Gosh, I've always loved exercise and physical exertion. I never had to motivate myself-- it was always like play to me. Can you find something you really enjoy? Walking on a treadmill and things like that are probably not much fun for you.

11-19-2010, 05:20 AM
...just looking for some motivation.

Motivation is everything.
MOVE on!

(Sorry. I'm not a native English speaker. Some things seem funny to me...)

Can't find the motivation to practise either.
I'm not on 'Pred', but I DO have 'Wegs' though...:biggrin:

Brooke
11-19-2010, 05:59 AM
Yeah, we have a treadmill, I really need to start using it. I dont mind it once I start.

elephant
11-19-2010, 09:24 AM
Brooke I watch tv when I do the treadmill. Any kind of exercise is good...tap, jazz,ballet sound fun too!

pwc51
11-19-2010, 10:29 AM
I put on at least 30 pounds with the pred and even when down to 7.5mg for several months nothing would come off, despite regular exercise and healthy eating. Have not dared weigh myself recently as my pred went back up to 60mg with my flare - I just feel it going on even more .... watch this space over time for further updates - although looking at other comments on this thread the website might have moved elsewhere by the time there is something positive to report!

Sangye
11-19-2010, 03:26 PM
Yeah, we have a treadmill, I really need to start using it. I dont mind it once I start.
Hang a donut in the air in front of the treadmill, just out of reach. :wink1:

Brooke
11-20-2010, 01:07 AM
Lol, good idea Sangye!
@pwc51 - I don't think I would want to weigh myself either being on 60mg of steroids. Try not to stress about it now, just focus on getting better :)

Gina Poole
01-05-2011, 08:08 AM
This is my 7th flare up and now having experience with the pred and weight gain I have finally found something that works for me to battle the weight gain and water retention. I actually have lost weight while on high dose of pred on my last two flare-ups! Got down to my highschool weight! Couldn't believe it. I no longer fear going on Pred because I see now it is possible to lose weight, or at least not gain weight. This is what has worked for me:

-I do 1 hr of cardio (on the elliptical as it is easy on the joints) every day.
-I keep my sodium at 1000 - 1500 a day.
-Watch calories (of course)

First time I went on pred in 2006 I did not know about the weight gain side effects and I gained 30 lbs in 2 months! Since then, each flare-up has been easier. I hit the gym as soon as I start Pred. Usually I start on 60 mgs/day 1st month, then 40mg 2nd month and 20mg 3rd month and so on. Like I said, last two flare ups I managed to lose 5 lbs during the three months on pred. It really helped my moon face too. No one could tell I was on pred. How cool is that! I also recommend reading the book "Coping with Prednisone: It may work miracles, but how do you handle the side effects?" This book taught me a lot. I break it out every time I have a flare. Check it out some time. Hope this helps.

Gina Poole

Sangye
01-05-2011, 08:20 AM
Gina, that's great. Cutting down the salt is a major factor. I don't think that degree of exercise is a good idea if you're flaring, though. It might explain that you continue to flare.

How on earth have you had 7 flares in 4 years? Something is seriously wrong with the care you're getting. Going on high-dose pred that much is very dangerous, much less the other drugs you must have taken to stop the flare. Do you have a Wegs specialist?

Gina Poole
01-05-2011, 08:32 AM
Yes, it is quite frequent. I have not been truly pred-free for more than a couple months in these past years. I've been on Cytoxan for 3 years. Can't seem to get under 100 mg. Every time they reduce it to to 75 mg, I tend to flare up. My Rheumy has a lot of Wegeners experience, however, they are now going to try to get me on Rituxan. Just waiting on insurance approval. My Rehumy is worried about me not responding to well to cytoxan so hopefully the Rituxan will work. My wegener's isn't too bad. I appear to have the limited type, I lost my hearing in one ear.... get bad ulcers in the throat, eye ulcers and such. No kidney/lung probs. Wegener's really likes to go for my hearing, so that is the major issue. Other than that I'm in good health. I was diagnosed at age 26. I am pretty active anyways, so exercising on pred wasn't too big of a deal. Salt is a major problem. Forget about eating pizza! My knees start to swell immediately when I eat a slice.

JanW
01-05-2011, 10:06 AM
Gina - Add my concern to Sangye's. Your rheumy may not be aware that the standard of care is now ctx no longer than a year at any time...there is a lifelong limit to the amount that you can take, and you don't want to use it all up in one go. I was at the Vasculitis Symposium and the bottom line research is 3-6 months on pred at dx, with a goal of getting off all pred within six months (I know a lot of people here don't hit this), with a goal of being on the hard-core immunosuppression (i.e. ctx) no longer than six months. Remission should be induced within six months IF, and only IF your regimen is truly effective. Three years is a LONG time for someone to stay on ctx, and it certainly raises your risk of bladder cancer. The number of flares you've had in a short period of time tells me that your disease may not be properly managed.

My doc related something to me today about pred, and it's serious -- 10 mg daily of pred, on average, WITHIN 3 MONTHS causes the same amount of bone loss that a 70 year old woman would lose in 2 YEARS. Really something to think about. I say this as a 45 year old African-American woman with the bones of a 75 years. I was always told that the half dozen times I was on prednisone (lower doses than yours) plus inhaled steroids for asthma that I didn't have (what I had was WG), wouldn't damage my bones. The doctors were incredibly misguided and I'm the one who is paying for their ignorance. Hope you are getting bone scans every couple of years, even though you are very young. Same thing with eye exams - you can get cataracts.

Gina Poole
01-05-2011, 11:14 AM
That's good to know. I appreciate the input. I'll be asking my Dr. about the bone scans. You're right, pred can have it's long-term damages too. I'll be getting off cytoxan soon as it just isn't working, clearly. I'm hoping Rituxan will be the key. Just waiting on insurance approval. Rituxan has its side effects too, but it appears they are less awful than cytoxan. I'll be happy to switch soon. Thanks for the information Jan!

Barbara1966
01-05-2011, 11:27 AM
I was very lucky I added only 7 lb from the moment I was diagnosed and started on 60 mg of prednisone, now I am only on 5 mg for last 4 months but weight it's still there. I walk slowly a mile every day shine, rain or snow I am very careful what I eat and how much, but still able to keep a moon face and extra lb's. Maybe one day I gone be able to get beck to my old clothing. :

Sangye
01-05-2011, 12:10 PM
Wow, Jan-- that is very interesting (and depressing) info about pred. :sad:

dunkie2202
01-05-2011, 08:01 PM
I was very lucky I added only 7 lb from the moment I was diagnosed and started on 60 mg of prednisone, now I am only on 5 mg for last 4 months but weight it's still there. I walk slowly a mile every day shine, rain or snow I am very careful what I eat and how much, but still able to keep a moon face and extra lb's. Maybe one day I gone be able to get beck to my old clothing. :

Wow Barbara you are lucky...only 7lbs ! I just have to look at food and my weight piles on lol. I have no chance in getting back into my old clothes, maybe I should have kept my maternity clothes they would have at least covered my belly hahahahahahaha

Jack
01-05-2011, 08:40 PM
Gina - you speak of taking Cytoxan for three years and also going without Pred for several months! That is just crazy treatment! For a start, three years is three times the recommended limit for this drug and also you should not be coming off Pred until your disease is well controlled and you are down to a low dose of a mild immuno suppressant. I suggest you find yourself a new specialist with some urgency before this one kills you.

gmyi
01-05-2011, 11:19 PM
HELLO
Talking about weight and exercise I tried to look in the web about exercising with IVC filter and I could not find any information about it I am not sure if it is safety to do some sport with that IVC insertion, has someone any suggestion because I gained weight and I want to go to the weight before W.G.

elephant
01-05-2011, 11:35 PM
I would ask the doc that put the IVC in. My guess would be no contact sport, but check it out before you start to exercise.

JanW
01-06-2011, 12:43 AM
Sangye, I actually asked him to repeat himself in case I misheard. This is a well known, large scale study. I think that what a lot of docs and patients believe is that, yes, pred, can do a lot of long term damage but don't really think about the amount of damage a high enough dose of pred (which is still a lot lower than many members here take on a daily basis) can do on a short term basis. That's what is so scary.

As he always says, he has never seen patients burned more badly than they are with pred, both prescribed by him, and coming to him from other docs. He has the appropriate amount of both respect (it saves lives) and fear (it also destroys bodies) for the drug.

Sangye
01-06-2011, 02:44 AM
Gina - you speak of taking Cytoxan for three years and also going without Pred for several months! That is just crazy treatment! For a start, three years is three times the recommended limit for this drug and also you should not be coming off Pred until your disease is well controlled and you are down to a low dose of a mild immuno suppressant. I suggest you find yourself a new specialist with some urgency before this one kills you.
Exactly. :glare:

Sangye
01-06-2011, 02:48 AM
Jan, would you mind posting that info in this thread? http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

freakyschizogirl
01-06-2011, 05:36 AM
I'm down to 7.5mg of pred next week and a new urge to lose weight. I guess i was quite lucky cos i was already fat before the steroids worked their magic. And if i've put on any weight it wasnt much - about 7lbs if that. Under pressure from my chest consultant to lose weight and rheumy is pushing the matter too. But i've never had any adverse health problems caused by weight. And food is the first thing i reach for in comfort if i'm stressed, upset or bored. I'm not a massive fan of sport per se but i do love some activities. Swimming is my ultimate fave but i consider myself too fat to go swimming the size i am now. Right now i have my wii and i will be doing some just dance as they have a new sweat mode...which is probably a load of rubbish but its something that keeps me active and i LOVE to dance. If that fails there are Zumba classes and some weight loss classes local. Fingers crossed i can do it on my own.

Sangye
01-06-2011, 06:05 AM
I hope you can do it, Sam. I was really self-conscious about going to a pool, too. But I don't really feel that now. In this area there is an unbelievably high number of seriously overweight people. I don't stand out as much as I would have back in Arizona.

Maybe try the other exercises and make your way over to swimming. If you love it you're more likely to do it. Good for you for trying. :thumbsup:

freakyschizogirl
01-06-2011, 06:13 AM
My nan used to say i was a water baby! Cos i love being in the pool, in the sea, in the bath or hours and i'll happily while away the minutes in the shower.
Only thing is while i was on holiday earlier this year and i was in the pool i get dizzy now from swimming, dunno if this is a touch of vertigo?

Sangye
01-06-2011, 06:35 AM
LOL That's my nickname, too. I'm a total water baby. Just like you-- any form will do.

freakyschizogirl
01-06-2011, 06:44 AM
LOL That's my nickname, too. I'm a total water baby. Just like you-- any form will do.


:thumbsup:

elephant
01-06-2011, 10:20 AM
Freakyschizogril, do what you love re: exercise. If you like to dance...dance! You will burn tons of calories. Swim too.
If you want to lose weight a good program is weight watchers, highly recommend it. I do have a Bachelor's degree in Nutrition. I have many friends who lost weight and are very happy with the program. You can do weight watchers on line too.

freakyschizogirl
01-06-2011, 10:20 PM
Yeah i dont weight watchers before. I know how to eat properly. its just the exercise. I walk pretty much at least an hour a day be it at work or with my pooch. But dancing is my biggest love.
A friend of mine has suggested we do Zumba too as there is a class starting up near us. Which looks like i will be roped into, lol

Brooke
01-08-2011, 01:56 AM
I just started walking again this week and really trying to watch what I eat. I am not currently on pred and it is a new year so I thought what the heck, lets try and lose this 40 plus pounds I have gained!! I like flat surface walking the best. Good luck with everyone and their exercising!

Jack
01-08-2011, 03:41 AM
Brooke - great to hear that you are free from Pred, long term it is the worst drug we take so hopefully you will be spared from the side effects. :thumbup:

drz
01-08-2011, 03:55 AM
Brooke - great to hear that you are free from Pred, long term it is the worst drug we take so hopefully you will be spared from the side effects. :thumbup:

Keep walking and talking about it to encourage others to do likewise. I hope you have good results. I want to start a similar program on our tread mill and exercise bike and weight machines to see if it will help improve endurance.

How many people actually get off prednisone totally. I only know two people with Wegener's, both rather mild cases. One is down to 6 mg Prednisone and the other is off altogether but has more symptoms than one still on it. My rheumatologist said he will try get me off it totally but he is doubtful it will work for me given my disease history.

freakyschizogirl
01-08-2011, 04:00 AM
How many people actually get off prednisone totally. I only know two people with Wegener's, both rather mild cases. One is down to 6 mg Prednisone and the other is off altogether but has more symptoms than one still on it. My rheumatologist said he will try get me off it totally but he is doubtful it will work for me given my disease history.

I'm down to 7.5mg pred next week! So happy to be coming down, with my limited Wegs hopefully i'll be a lucky one who can come off em for a long period! My Rheumy is quite optimistic that my wegs will stay controlled with Methotrexate

JanW
01-08-2011, 05:03 AM
Frankly the researchers at the Symposium acted like it was a 'no brainer' that the vast majority of people with WG *should* be coming off of pred and having their disease controlled solely by immunosuppressant, and/or at other points having a medication free remission. As I have said many times, I met several people at the Symposium who were either off meds, and had been for a few years, or were currently flaring but had been off meds for a long time (in one guy's case more than 20 years). I think that what the researchers know is that docs who are not as familiar with the disease leave people on pred for a long period of time, because it helps to treat symptoms that really should be controlled by more/a different kind of immunosuppression. I met people there who would just have the pred being pushed up down up down constantly, with their main engine (mtx, cellcept, ctx, imuran) always staying at the same level. Kind of ridiculous.

I add too that my ENT has done more than 100 saddle nose repairs (and many people with these do have 'limited' disease with just upper resp involvement) and has only once operated on a patient who was on any meds whatsoever, and that was 2 mg daily pred.

My rheumy believes that pred is such a dangerous drug that docs should generally be trying to get their patients off of it all together, if that is at all feasible for their case, or never start it at all with them (which he has done in a few cases, including mine).

elephant
01-08-2011, 07:19 AM
You go Brooke, I have been walking and it makes me feel better about my self. I usually go how I feel that day. If I feel up to it I do it, so I usually walk 4 days a week. I am on 5mg of prednisone and hope to come off it. I am taking it very slow.

freakyschizogirl
01-08-2011, 10:57 PM
Keep going elephant!! Maybe we should start a new thread to track each other's weight loss and keep ourselves on the straight and narrow!

dunkie2202
01-09-2011, 07:25 AM
Yeah i dont weight watchers before. I know how to eat properly. its just the exercise. I walk pretty much at least an hour a day be it at work or with my pooch. But dancing is my biggest love.
A friend of mine has suggested we do Zumba too as there is a class starting up near us. Which looks like i will be roped into, lol
Go Sam....your off to a great start walking for an hour each day. Well done.... I've heard that Zumba is pretty intense lol. I would love to say I had the energy to try it to but my kidneys won't let me. I'd be lucky to walk 100 mtres. oh well maybe when I'm finally on dialysis I might get the energy too

elephant
01-09-2011, 10:36 AM
When your kidneys are not functioning that well, it is very hard to exercise. I remember how difficult it was.

Brooke
01-11-2011, 01:17 AM
Thanks Elephant, yes take it slow. 4 days a week is really good though! I am going to try and walk at least 30 minutes Monday through Friday.

drz
01-11-2011, 06:41 AM
Thanks Elephant, yes take it slow. 4 days a week is really good though! I am going to try and walk at least 30 minutes Monday through Friday.

How far can you go in 30 minutes? Can you do that without stopping and resting?

Brooke
01-11-2011, 07:18 AM
Drz -
Yes I can walk 30 minutes with out resting, I feel I am in remission (knock on wood!!!) On Saturday, I walked for 30 minutes and then my mom called and asked if I wanted to go shopping. We shopped from 1 pm to 6 pm. We took a break to eat but that was about it. I was up and moving and shopping!! No shortness of breath, no wheeze, no cough, I have been feeling great since last Summer. I had a sinus infection of some sort from about the begining of Nov to late December which has now resolved. I really do think the Rituxan has helped me. I will be doing another Infusion to keep the Wegeners at bay once my B Cells come back, as of mid Dec, they were still gone.

Brooke
01-11-2011, 07:19 AM
Oh -
I am not sure how far I can go in 30 min, I would guess 1 1/2 miles.

drz
01-11-2011, 12:05 PM
Drz -
Yes I can walk 30 minutes with out resting, I feel I am in remission (knock on wood!!!) On Saturday, I walked for 30 minutes and then my mom called and asked if I wanted to go shopping. We shopped from 1 pm to 6 pm. We took a break to eat but that was about it. I was up and moving and shopping!! No shortness of breath, no wheeze, no cough, I have been feeling great since last Summer. I had a sinus infection of some sort from about the begining of Nov to late December which has now resolved. I really do think the Rituxan has helped me. I will be doing another Infusion to keep the Wegeners at bay once my B Cells come back, as of mid Dec, they were still gone.

This really sounds great that you can do all this. It is encouraging for those of us that have trouble walking more than a couple hundred feet with out resting. Congrats on getting your remission and hope the Rituxan helps you keep your present level of functioning or even make it better.

elephant
01-11-2011, 01:07 PM
That is wonderful Brooke, sounds like you are in remission!

Sangye
01-12-2011, 05:11 AM
Wow Brooke, I am smiling ear to ear reading how well you're doing! So happy for you. :thumbsup::w00t:

Brooke
01-12-2011, 07:55 AM
Thanks Sangye! I hope this gives a little hope to some people that Rituxan can work.

Jules
02-11-2011, 05:08 AM
Been on pred. since 1st December and huge weight gain and moon face here too - was likened to an Ooompa-Lumpa off Charlie & The Choc Factory!!! Cant say I'm happy about it, but my current thinking is that it is saving me a fortune on botox, as all my lines have been filled in for free . . . if only it did the same job on the saddle-nose!! Am living with the weight gain at the moment . . . that's a future challenge to face when things are more under control.

elephant
02-11-2011, 05:22 AM
Jules some of the weight comes off once your prednisone is decreased. Yes, I told that I looked 15 years younger with the moon face!

freakyschizogirl
02-11-2011, 06:09 AM
I actually didnt put any weight on while on higher doses of pred, now down to 7.5mg, which all my doctors were very impressed with. I put this down to already being overweight and i think i've hit my peak of fatness. That being said losing weight is so hard and thanks to my Chest consultant i am now worried about high cholestrol which at the moment is sitting at a normal 5.2. And also very worried about Diabetes...supposedly GP's (in UK) give help and guidance to people with weight issues...i've yet to meet one although all my doctors are very quick to tell me how fat i am.

Sangye
02-12-2011, 02:21 AM
Brooke, I love your avatar! You and your family are so beautiful. :smile1:

Brooke
02-12-2011, 03:12 AM
Thanks Sangye!! I wasn't sure how to add a picture but figured it out after searching how to do it on another thread :)

coffeelover
02-14-2011, 06:13 AM
Ziggy,

Its a constant struggle. I too have put on weight and it seems more and more with each year that passes. But the other day I decided that I can blame the pred all I want, part of this is my behavior! So I now am sure to do some form of physical exercise 6 days a week and and very consientous of what I put in my mouth. Of course, I have not given up my coffee, so others things will have to suffer. I have recently ordered the Mayo Diet Book and will update you on that when I receive the book and journal information.
I do think if I just journal WHAT I eat that would be an eye opener for me and may help me with the constant shove.
Ill keep you informed. Good luck to you
Lisa or coffeelover