Prednisone/Weight Gain Questions:

[TOBEY32]

1. Have been down to 20 mg for a couple of months. Doc wants me to remain at 20 mg.

Can I expect to shead some/all of this extra 12-15 pounds while at 20 mg? If you lost some of the extra weight was there a "delay" coming off? For the longest time is wasn't there. One morning it seems I've got these Michelin Man rolls (lower back).

2. Can one expect to control some of the weight gain through eating (less) - or is it even related in that way?

David

[drz]

1. Have been down to 20 mg for a couple of months. Doc wants me to remain at 20 mg.

Can I expect to shead some/all of this extra 12-15 pounds while at 20 mg? If you lost some of the extra weight was there a "delay" coming off? For the longest time is wasn't there. One morning it seems I've got these Michelin Man rolls (lower back).

2. Can one expect to control some of the weight gain through eating (less) - or is it even related in that way?

David

Have same question and concerns. It is almost 18 months since I left the rehab facility and my weight is same now as it was then. The good news is I haven't gain any more. Before my diagnosis almost two years ago I lost about 15 pounds and then lost another 10 during treatment when I couldn't eat. I was advised to eat a lot to gain my weight back and with the help of the pred meds I gained it all back plus another 20 pounds that I cannot seem to lose.

I have been on 5 mg of pred for past six months and was on about 40 mg when I left the rehab facility.

[RudiK]

The weight gain is a problem for me too. I had lost over 20 lbs before I was diagnosed and another 10 lbs during treatment while on 60 mg Preds. I went into remission about six months ago, reduced Preds to 7.5 mg and regained all the lost weight plus added 15 lbs that I can't get rid off. My docs say the combination of the different meds "could" cause the weight problem. I'm now at 195 lbs at 5'10" height.

[TOBEY32]

Some of what you guys say is me: going from underweight to overweight. Don't see how medicine "combos" can cause weight gain, but have no idea...

[freakyschizogirl]

Have same question and concerns. It is almost 18 months since I left the rehab facility and my weight is same now as it was then. The good news is I haven't gain any more. Before my diagnosis almost two years ago I lost about 15 pounds and then lost another 10 during treatment when I couldn't eat. I was advised to eat a lot to gain my weight back and with the help of the pred meds I gained it all back plus another 20 pounds that I cannot seem to lose.

I have been on 5 mg of pred for past six months and was on about 40 mg when I left the rehab facility.

drz - have you lost any weight being at 5mg?

Now i'm tapering down to 4mg the Doc at Adds told me i had to lose weight by my next appointment. I cant seem to shift it and find myself getting frustrated. I have been the weight i am now before and said "thats it, time to lose weight" and have done - although not masses, but like 10lbs to a stone.

I sat and cried to my fiance the other night because i just despair at my weight i feel hideous and fat. I've always been big tho and it runs in my family, i firmly believe there is a genetic predisposition to being obese.

At lease i know i'm not alone with this weight loss nightmare!

[Yvonnea]

I put on weight with the steroids too. But on my last flare, even though I was put back to 60mg of prednisone, I didn't. Well other than the puffy face.
The reason was that I started with the Paleo diet. Its a toughie. Have to give up everything that I love, pasta, pizzas, potatoes (that hit me the hardest, as I am Irish ;-) ) But it works.
They say to be strict for the first month, and then you can introduce certain foods back into your diet.
The author talks a lot about autoimmune diseases and diet. Really helped me, so if anyone is interested, I will gladly send them on the pdf booklet I have on it.

[Dirty Don]

Yvonnea, neat sounding diet...why don't you post it on here for anyone who is interested so you don't have to deal with a hundred separate ones. I'm interested!

Don

[Yvonnea]

Good idea...but its a pdf file and i am not sure how to upload it.
But if you want to have a quick peek and see if you still interested, go to this Guy's website...Robb Wolf. He is the guru to all things Paleo...really like how he addresses inflammation and how to reduce it in our diets.....Robb Wolf | The Paleo Solution book and podcast | Paleo diet, Paleolithic nutrition, intermittent fasting, and fitness (http://www.robbwolf.com/)
Definitely worth a look anyway.

[Red]

I to put on lbs went from 6'1 250 pre to 240lbs then 60 mg pred 5 months later 305 lbs now 6 months off pred lost 20 lbs i hope it will all come off with time.

[pberggren1]

David, I think the bigger question is why your doc wants you to stay at 20 for a while.

[TOBEY32]

Glad you're back on the gravy train, Phil (you were in the hospital?).
Gonna ask doc next time if I can try less than 20mg. Can't say for sure why he feels 20mg is needed. Sure won't know what less than 20mg will do till we do it...

[drz]

Glad you're back on the gravy train, Phil (you were in the hospital?).
Gonna ask doc next time if I can try less than 20mg. Can't say for sure why he feels 20mg is needed. Sure won't know what less than 20mg will do till we do it...

Have you been below 20 mg and flared at the lower dosage?

Generally the doctors have told me the goal is to try get you down to the lowest maintenance dosage that is safe for you. For most people they guess this to be in the 5-10 mg range but some get lower and some can not get this low with out an increase in symptoms from the Wicked Granny. Most complications from pred reduce at this range but some may still be present. For example a cousin developed pred cataracts but never went over 10 mg of pred meds.

I haven't been able to lose any weight in 18 months despite tapering down to the 5 range where I have been the last 6 months and plan to for rest of the year unless I have another flare and need an increase.

[mishb]

I haven't been able to lose any weight in 18 months despite tapering down to the 5 range where I have been the last 6 months and plan to for rest of the year unless I have another flare and need an increase.

This is me too drz - in 12 months anyway. And being not even 5 foot, I can't afford to have the extra 10kgs that I have put on.
I have been on 5mg pred since last August and will remain on 5mg until July this year and then hopefully they will try to reduce again.

Mr. insensitive jerk Rheumy that I saw last week even said to me ..... you know you are not supposed to get pregnant whilst you are on MTX.
I said, at nearly 47 with two grown up kids, I have no intention of getting pregnant. He just looked at me.......yep, I thought, it's all around my middle.

I would love to just have the power to say to you drz ...... there will be no more flares and you will be able to taper down without a problem. Oh to have such power.

[pberggren1]

I was in the hospital quite a bit in October and November last year because of S. Aureus lung infection.

When do you see your doc next Dave?

[Dryhill]

drz - have you lost any weight being at 5mg?

Now i'm tapering down to 4mg the Doc at Adds told me i had to lose weight by my next appointment. I cant seem to shift it and find myself getting frustrated. I have been the weight i am now before and said "thats it, time to lose weight" and have done - although not masses, but like 10lbs to a stone.

I sat and cried to my fiance the other night because i just despair at my weight i feel hideous and fat. I've always been big tho and it runs in my family, i firmly believe there is a genetic predisposition to being obese.

At lease i know i'm not alone with this weight loss nightmare!

Many years ago I used to walk about two miles getting to work and the same getting home, I would also run six days a week covering around 50 - 60 miles, I would eat exactly what my wife ate and had trouble keeping my weight down. Just changing your diet DOES NOT work! You HAVE TO have a complete change in your lifestyle. This involves:-

1. How much you eat.

2. What you eat. Clearly what you eat is about cutting out all the nice foods like chocolate, icecream, cakes, chips etc.

3. When you eat. This old saying is a good guide " Breakfast like a king, eat lunch like a prince and have tea like a pauper." I used to be a night taxi driver and I would have a meal about 2pm and start getting ready to go work, I would then have a big meal when I got home about 3 - 4am and go straight to bed. Of course I had kept myself going with whatever one can buy at night (in other words fast food junk). Since having WG I only work days and do my best to follow the breakfast like a king saying and now my pred has reduced to 15mg a day my weight is slowly (and I do mean slowly) coming down.

4. Exercise. Well all weggies of course can go for a nice 150 mile cycle ride or run 15 miles and then perhaps fit in the odd 50 laps of a swimming pool. I do that nearly every day ............ then I wake up, it was such a nice dream. :mellow:

Jim

[freakyschizogirl]

4. Exercise. Well all weggies of course can go for a nice 150 mile cycle ride or run 15 miles and then perhaps fit in the odd 50 laps of a swimming pool. I do that nearly every day ............ then I wake up, it was such a nice dream. :mellow:

Jim

:laugh: This made me laugh!

I think my problem is i want quick progress and i know really it wont be a quick weight loss but a long hard struggle.

I think i need to go up the road to my gym and use their swimming pool. I use to love swimming and should be back to it really.

[TOBEY32]

Checked the library re the "Paleo" book. There are 2 different ones - each one have 12 people waiting ahead of me. Might be some useful info in them.

[Geoff]

I have been told by the docs that there is little chance in losing weight whilst at 7.5mg of pred. (I am on 15mg)

I am very lucky being 6ft 4ins and so the extra 3 stone since DX is spread about!! Strange but I dont get the 'must eat' cravings anymore but find myself incapable of any exercise apart from a very slow short walk.

Why do I get such an 'uplift' after eating??

Good Luck to anyone out there who manages to lose weight!!

[MCC]

I have lost weight since being off the medication, but like some of you I tried many times whilst on the medication but no joy! Now I weigh about 1-2kg off my pre illness usual weight (I am still 8kgs above what I was before I started medication, but I lost a lot because I was ill so I don't consider that 'usual').

I recommend Eat to Live - 1) you will lose weight 2) It will help your health - and we could all do with that! 3) It is easy to follow, nothing complicated or confusing Amazon.com: Eat to Live: The Revolutionary Formula for Fast and Sustained Weight Loss (9780316829458): Joel Fuhrman, Mehmet C. Oz: Books (http://www.amazon.com/Eat-Live-Revolutionary-Formula-Sustained/dp/0316829455) It's about eating healthful, wholesome foods - not processed rubbish. He talks about automimmune problems in the book also.

[Dryhill]

I am very lucky being 6ft 4ins and so the extra 3 stone since DX is spread about!! Strange but I dont get the 'must eat' cravings anymore but find myself incapable of any exercise apart from a very slow short walk.

That really is my trouble, I am not actually overwieght I am just too short!

[mishb]

That really is my trouble, I am not actually overwieght I am just too short!

I say that all of the time - I am just short for my weight OR; Vertically challenged :biggrin1:

I would be so underweight if I was 6ft 4ins like Geoff.

[malin]

drz - have you lost any weight being at 5mg?

Now i'm tapering down to 4mg the Doc at Adds told me i had to lose weight by my next appointment. I cant seem to shift it and find myself getting frustrated. I have been the weight i am now before and said "thats it, time to lose weight" and have done - although not masses, but like 10lbs to a stone.

I sat and cried to my fiance the other night because i just despair at my weight i feel hideous and fat. I've always been big tho and it runs in my family, i firmly believe there is a genetic predisposition to being obese.

At lease i know i'm not alone with this weight loss nightmare!

Oh hon, my heart kinda breaks a little when I hear that you cried! about your weight and that docs told you you HAD to lose some weight!

You don't HAVE to do a damn thing if you don't want to and I think it's a bit irresponsible of docs to say you have to lose weight and then send you on your way. Did they give you any tips/ideas or advice on how to do so?

I'm classed as obese and the only reason I want to lose weight is because I want to fit into nicer clothes. Part of my plan to lose weight is to eat healthier but I'm not going on a diet. I'm simply gonna try and eat healthy, fresh foods and only eat when I'm actually hungry and then stop when my tummy says I'm full. I firmly believe that is the right way for me. When it comes to excersice, I'm going to start walking and in the futrure, swim and again, I'll excersice cus it's healthy for my body/mind and makes me feel good, the fact that I might/will lose weight is a bonus not a reason to why I do it.

Google: HEALTH AT EVERY SIZE and see what you think?

For me, Yes, I don't want to be the size/weight I am now but MY (own) ideal weight is going to be around 90 kg. Now that's WAY more than I "should" weigh accoring to IBM and so on but for ME I think that is my bodys own ideal. I used to be that weight when I was younger, I was that weight when I did eat healthy and walked before. (I stopped but that's my own mistake) I used to walk for atleast 1 hour everyday a few years ago, and ate healthily, I never got below 92 kg, no matter what but my old Rheumy used to pressure me to lose weight and as a result I felt so damn **** about myself. I wish I had know what I do know and then I wouldn't have let her make me feel so bad about myself. I was probably the healthies I've ever been but I felt so disgusted that I couldn't meet HER ideal for me that I ended up thinking "Why do I bother" and slowly gained the weight more again.

Instead of focusing on what other people say you should be like, try figuring out when YOU and YOUR body feel best, no matter what others might want your weight to be.

Sorry for the long post but I felt I needed to get some stuff out! :)

[freakyschizogirl]

Hey Malin, good to hear from you!

Yeah i think Doctors put too much emphasis on fitting into the accepted weight according to a BMI chart. I know i will never fit into this chart and wonrt even try to.

I want to lose weight so i can go swimming and not feel like everyone is staring at me, tho i know they probably arnt.

Happy to report i've lost 3lbs this week purely by eating better: i have a salad at lunchtime now and changed the way i snack - more nuts, seeds and dry fruit. I havent had chocolate for a week but had some last night and oh my does it taste good!

So i'm just about half way to my 7lbs requested by Adds and not due back til May, so hopefully i can lose more and show them that i'm not just being lazy.

To be honest i was very stubborn about losing weight cos i been told to. I wanna do it for me. But no, no one ever gives you advice. All i've learnt about anti inflammatory diets and what foods we should eat etc i've found out by myself.

Keep your fingers crossed i lose more next week!

[Sangye]

I say lose the weight while you can. Not for looks but for health. Being overweight sets you up for so many health problems, many of which you can't appreciate at a young age. Also, you never know if something might happen that prevents you from losing the weight. That's my reality. I'm not able to exercise much at all--certainly not enough to burn anything. And unless I eat below 1,200 calories every single day, I can't even lose a pound. I've logged my food very carefully and this is the reality. My endocrinologist agreed that weight loss is impossible for me at this point. Without getting off hydrocortisone and being able to ramp up exercise, there is no way to do it.

[mishb]

I lost weight before I went on the meds.
Then one day, when I least expected it, weight found me again. :razz:
Apparantly she wasn't lost at all, she was just hiding in my wardrobe awaiting my return. :crying:

[NicShaf]

I'm sure it's a little different for everyone, but in my experience, I couldn't seem to lose weight until I was at about 3mg of Pred. I joined Weight Watchers (I swear by this program) and as soon as I hit 3mg, I started losing a little each week, about a pound a week.
This will be my first week on WW and completely off Pred, I'm hoping it goes better, but have to wait and see.

I did not find that eating less stopped my weight gain. I have read that avoiding simple carbs, sugar and SALT can help, but some of it is unavoidable.

How are you doing otherwise, Tobey? Why do they want to keep you at 20mg for a while?

[Lightwarrior]

I agree with Sangye, loose.the weight if you can. I waited,thinking that I would lose the weight when I got ready, afterall I have enormous willpower and can do anything I decide. Oops who knew I would get wegener's and have to go on massive amounts of prednisone for, well I have not yet been able to get off pres and now I resemble a giant sea turtle and I am most dissapointed in myself. So my point is...if you have the opportunity to get to a healthy weight then do so.