You are absolutely right. Pred is a drug with a double edged sword, without it, I suffer from Pericarditis, not fun. As I taper off I hope to be able to be taken off the pred completely.
I look back and inspite of the awful weight gain and burning muscle sensation, I'd rather be here than were I was last year. My faith in God, family, friends and blogs like this have been very instrumental in my everyday life.
I have been told so many times it's difficult for them to know I am not feeling well, I appear well and chipper. my husband had a hard time understaning Lupus even though he did attend most of my Dr's visit. So this sight is great to find support especially when you are down and out and unhappy with your appearance.
Teresa, I understand about people not understanding. There are so many diseases where a person DOESN'T LOOK SICK -whatever that means. Asthma is one (unless you are wheezing loudly). My ex-husband used to give me THAT look - as if I was "acting". And actually, it wasn't until my MF (male friend) saw me hooked up to the IV with chest monitors on my chest, that he really understood. (Now, he's too understanding and wants me to take it easy too much.) But if we retain a positive attitude, and believe that "all things work together" and remember that there is always someone worse off -- we can get through it.
Someone recently in this thread asked if a short stretch (5-days with a weaning period) would make you gain weight. When I wasn't menopausal short bursts of prednisone didn't effect me. Now that I'm old in years (but not in attitude), the smallest dosage starts the weight gain. But, never give up -- never, never, never, give up.
You have some very encouraging words, Total Praise, you should post more often. I don't think short bouts of pred will cause trouble but anything over a month or 2 will. I get the muscle weakness and pain even though, after 3 yr., I am temporarily off the pred. I think I'll be going back on soon but I have learned a few things like if you get down to 5mg, you can probably handle it.
Since the doctors upped my dose of prednisone from 10mg daily to 30mg daily, I have gained an enormous amount of weight. I gained 40lbs. in 2 days! I have gotten stretch marks all over from the rapid/excessive weight gain. Does anyone have any tips on how to get the weight off so I can start living a healthier life and not feel so bad physically and about myself?
Someone above mentioned that a diuretic would help a little with the sudden weight gain. It's the terrible hunger on high doses that gets me down. Lower doses can be handled but by then you might have 50 or more lb to lose. I just eat when I'm hungry until I'm not, usually pretty small amounts. I used to think low carb was the way but that is hard on the kidneys and I have damaged kidneys.
SOOOOO glad to find this thread! I started prednisone in Feb 08 for chronic hives and I really appreciate the comment about not "looking sick" but being on very high does of medications. Not only predisone but tons of antihistamines, calcium supplements, other supplements. I'm getting close to being off the prednisone which in my opinion is harsh but let me to live my life while breaking out with quarter to dinner plate size hives all over the body. I have also gained about 40 pounds...very frustrating....and have the nasty stretch marks to prove it too...any suggestions on those?
I know there is hard work ahead of me and more than the weight loss I need to protect my bones, my heart, and my life and eating right and exercising are what will do that for me.
Thanks again for this thread!
Kelly
If you get down to a lower dose, say 5mg every other day, you will be less hungry but still need to watch portion sizes. I tried different diets but none seemed to help with pred use. So now I just try to eat less.
has anyone else suffered from steroid psychosis? i was on pred for 2 friggin weeks (that's ALL - no weight gain issues) but spent the last week tapering and the next week and a half hallucinating, not sleeping (on an alarming amount of ambien), and pacing. like a crazy person. couldn't stop twitching and moving. i didn't know where i was half the time. the best my doc could do for me was keep me sedated (passed out even better) until my pituitary gland started working again. i really, really hope that i never get sick with something that requires steroids, because i won't take them. surely medical science can come up with a better solution!
Last edited by kuhljeanie; 10-29-2008 at 11:24 AM.
Well, if your kidneys were failing because of sarcoidosis, you'd have to take them. I once made the same statement and here I am on them now for 3 yr. Better than a kidney transplant and antirejections meds. And yes, I've had the trouble you speak of, not too often, though. I went off them for a month this summer and when I went back on I woke up one night not knowing where I was and sure I was dying.
it's awful, isn't it? had a night when i was sure my soul was flying around the room and i could see my body. i was almost relieved when i found out i was just hallucinating. i'd never heard of sarcoidosis before i read this thread... that's heartbreaking. wishing you the absolute best!
Hey! My name is Haley and I have been on Hydrocortisone for 21 years for Addison's Disease. I was on Predisone before and gained tons of weight on that, also. I can't seem to lose the weight that the steroids cause. I can lose it if I don't take it, but then I would die. I would rather be fat in that case. Anyone got any tips for losing the weight?
Ah, back to this thread. Prednisone has saved and ruined my life simultaneously. Saved because I just couldn't handle the pain of autoimmune problems anymore, ruined because I gained 70 pounds and no longer recognize myself when I look in the mirror. As I mentioned before, it's mostly in my midsection. I only went up in pants from a size 9 to a size 11/12, and with that much poundage one would expect to go up more, except that it's not in my hips and butt, it's all in my stomach and lovehandles, not to mention the moonface and buffalo hump.
One thing I was sad to realize is that there is a lack of info not only on how to deal with weight on prednisone, but also with mood swings! I don't watch much television but caught a couple of episodes of "house" recently, and in some of them people were put on prednisone and it was mentioned that it causes mood changes. This made me realize how rarely I ever hear anyone acknowledge this fact! I only had a few episodes of all out steroid psychosis with hallucinations, usually upon waking up in the middle of the night, but 24 hours a day my moods were affected. Usually in a negative way, irritability, severe depression (I would come to my dorm room between classes and just cry for no good reason), sleeplessness, paranoia, all sorts of things. The biggest thing for me was lack of motivation. Not just laziness, but I mean severe lack of wanting to do anything, ever, moreso than just with depression, it was like my entire personality and attitude changed 100%.
While I managed to lose a about 30 of the pounds I gained, I am still struggling, and agree with whomever who said her problems were more the hunger than the lowered metabolism, though I'm sure both are part of it. I still want to eat all the time, and before prednisone I could eat whatever I wanted and not gain weight, so I suppose I was spoiled in a way, and it's ging to require more lifestyle changes.
I should probably mention that, though it makes me eat like a horse, the 30 lbs I lost were by walking and giving up nondiet soda. Between the lack of willpower that I think is egged on by the mood changes from the prednisone and the increased appetite, I just always want to eat, like stuffing my face until I can't eat anymore a few times a day and then grazing the rest of the day. Even if I feel somewhat full, that feeling doesn't last. So I am trying to focus on eating/drinking healthier rather than just trying to cut calories. I have given up the nondiet soda in favor of water and crystal lite (which makes me feel less like I'm denying myself, drinking a sweet but low cal drink now and then), and having veggie instead of potato chips (I'm lucky in that I love veggies though).
I found this forum during a general search on losing weight while on prednisone and aftr I registered it took me forever to re-find the posts that I was interested in reading! I was diagnosed with sarc in June08 although for a few months after a lung biopsy they thought I had lymphoma. No matter what I was on the prednisone because I had high blood calcium and almost stage 4 kidney failure. A lymph biopsy in Sept 08 confirmed the sarc.
I had finally taken the bull by the horns, joined Curves (after losing about 20 lbs when they adjusted my thyroid med etc). I continued eating better and exercising and lost another 33 lbs. It was getting harder and harder to breath while exercising so the workouts weren't as hard or long but I still could lose 2-4 lbs a month. Then came the prednisone. I've gained 14 lbs in 7 months, feel just as crappy as I did before when they thought I had hormone problems disturbing my sleep and reducing my energy to nil. Kidney function has only improved a small amount and while I don't cough all the time, I have to use an inhaler to get through a much reduced workout. Losing 50 lbs helped reduce my diabetes and high blood pressure meds but the pred has put me back right where I was.
The respirologist here (Victoria BC Canada) doesn't have any one else with sarcidosis with symptoms like mine and figures that I should be grateful for only 14 lbs gained - I'm not. I might be if I felt better but after a day at work (self employed quilt shop) I can barely find the energy for the gym and after that I crawl home and try and loose the mood before I start the next day. At least before pred, losing weight kinda lifted the energy at the gym but now I am finding it harder and harder ti make myself go.
I've never really had a 'belly' - just put weight on all over like an fat pump had just blown me up like the Pillsbury dough boy. Now I measure more around the belly than I did 40 lbs ago. Necklaces are now chokers.
I'm glad to see that I'm not alone and I've read things about pred that I hadn't seen before. My GP won't make any decisions and I don't see the specialist again until April. I am hoping that if I haven't significantly improved he will take me off the meds and let me limp along as before..
'Til then, no calcium, no sunshine, low protein, low carb - barely enought fuel to get me through a workout,and barely enough patience and good humour to get me through a day of demanding customers.
gailtucker
sorry to hear. I found this forum by searching about prednisone specifically too, I swear the stuff has been ruining my life for a couple of years now.
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Losing 50 lbs helped reduce my diabetes and high blood pressure meds but the pred has put me back right where I was.
Ugh. Yes, I feel yr pain there. I was hospitalized in mid January afer losing 35 lbs or so, they put me on some other steroid intravenously for 2 days then switched to oral prednisone for the next 2 weeks. The weight? Yeah, it's back. So are the related health problems.
Quote:
I've never really had a 'belly' - just put weight on all over like an fat pump had just blown me up like the Pillsbury dough boy. Now I measure more around the belly than I did 40 lbs ago. Necklaces are now chokers.
Yeah, the different distribution of fat freaks me out a lot, when I gained weight a while ago before the prednisone, it was in my thighs and butt and I still felt strong and energetic, I jsut had a bit too much fat in my lower body. Then I lost the weight through exercise. Then the prednisone and I gained all of it back and then some, and feel so tired and weak all the time that I have trouble getting myself to exercise. I just want to sleep. And my belly is huge, so are my upper arms and neck, my legs less so, but god, the belly...
I've been on prednisone for more than twelve years and as a result suffered many of the side effects.
I don't think losing weight is impossible but I do think it's much more difficult. First of all you don't usually take prednisone, especially in high doses, unless you are really sick! That in itself often contributes to weight gain.
When you don't feel well you don't have the mental energy that's needed for long term weight loss.
I lost forty pounds while on prednisone but it was a lower dose than I am on now. I was quite sick for over a year and on 40 mg of prednisone I gained thirty pounds and lost most of it with in a short time of lowering the dose.
I think the higher the dose/longer you are on it, the more likely you are to gain weight
I am still quite overweight but this is more from numerous feet fractures and injuries when I try to exercise.
It's easy to blame the gain on prednisone when it may be emotional factors causing the weight gain.
