Post prednisone expectations for general health and weight loss

[Karen Lynn]

I am also feeling very frustrated trying to get off predisone. I have been on since Jan. due to chronic hives. As soon as I start to taper the hives come back. I feel very tired all the time. Like chronic fatigue must feel. I am at my wits end with the weight gain. I don't feel like myself or look like myself. Does anyone know how to get the adrenal glands working again? I am still trying to resist the craving of sugar which I have never had before. Any help would be appreciated.

[joe11]

have you heard of low dose naltrexone or the lightning process for your sarcoidosis?

[Krystle]

I had been taking prednisone on and off since I was 16 (I'm 24 now). In the beginning it was short, 1-2 week tapers starting at 60 mg. My asthma started to get worse as I aged and I had to take it more frequently and everytime I went to the ER for an attack they would inject steroids. If I was hospitalized I would be on very high dosages. About two years ago I was thrown from a horse and suffered a head and neck injury in which the thought I broke my neck. They had to give me very large dosages of steroids to prevent spinal chord damage. I thankfully did not break my neck, but cracked a few ribs and that developed into pneumonia and I as hopsitalized. After that it seemed that I was always on steroids. I gained 80lbs in 2 years and developed exogenous cushings. I had been a very fit, toned, and slender 150 lbs and 5 ft 8 since I was 16. I also developed severe depression from this medicine and terrible joint pain and unbearable fatigue. The doctors never warned me about cushings and the only reason I found out what was wrong was because I was watching "Mystery Diagnosis" on Discovery Health. Needless to say I was devistated. I felt ugly. I had huge stretch marks on my abdomen and everyone thought I was pregnant. I am a teacher and it hurt so bad anyone would ask and it sent me deeper into depression. I refuse to take steroids now and it is in my living will. I have barely stared to go back to my pre-prednisone body. I had a full tummy tuck and liposuction of the hips and inner thighs 6 weeks ago. My doctors told me that I would never lose the majority of the abdominal fat on my own. I was a a much higher risk for heart disease because both my parents died from it. Abdominal fat is predictor of heart disease and it would have never gone away. I am glad I had the surgery because my self-esteem is starting to return. I still have constant fatigue from the steroids and the depression it caused. I do not think I will ever be rid of that compeltely. It is a long road back from prednisone usage.

[Bahati]

I've been taking prednisone since April after being hospitalized with a flare from Lupus. I was always fearful of the drug and discussed it with my Dr. I was only on plaqunil at the time of the flare. I didn't know about all of the side effects of the drugs until a couple months ago when they seemed to all happen at once. I definitely have the flushed chipmunk cheeks, hump on the back of my neck, and pudgy stomach and I've gained about 15 pounds. It can be very depressing especially when people ask you if you're pregnant! I've always hated drugs even OTC medication, but I am greatful for this drug has done for me so far. Life is all about sacrifice and adjustments, stay strong!

[Connie]

Hello Everyone,
When I turned 30 I had 3 years of sinus infections month to month, getting prescribed antibiotics and pregnisone. Finally I went to a specialist and had to have surgery for sinus polips. I have had 3 surgeries and now I only get a sinus infection about twice a year. Unfortunately my sinusitus is so bad they always have to prescribe pregnisone. That means every 10 months I get on pregnisone starting at 40mgs stepping down to 5 mgs. Over the years I have gained 100 lbs. I lost 15 lbs last year after I had been off of pregnisone for about 1yr but shortly after I got a bad sinus infection again and I had to go back on it. I fluctuate about 5lbs when I am on it and I have a lot of digestive issues. I am nervous, and easily angered (almost like PMS). I really need to lose this 100 lbs but everything I try makes no difference. I take Tae Kwon Do twice a week and am in the yard in the south all weekend. sweating my but off. It is starting to depress me and making me think that maybe I need a gastric bypass just to loose this weight. It has been helpful seeing that I am not the only one having weight issues on Pregnisone, but I still want to get this weight off.

[Virginia Johnson]

I am on 30 mg of prednisone for temporal arteritis. It has helped but I still get headaches and bad moods, worse insomniaevery night. How long can I expect to stay on Prednisone, assumung eventually I will get over this. Does anyone have any idea? No one seems to want to talk about this aspect of the desease.

[sue]

noone is going to want to hear this, but i lost weight on prednisone. could be more related to the hospitalizations for pericarditis flareups. have been trying to go off it so slow it is ridiculous(am on 2 mg now) i have a cold that won't go away. very frustrated.

[Julia]

Here I am, awake at 4am with insomnia (again), searching for other people with a bloated stomach from Prednisone! The mood swings are terrible, too. While it's comforting to not be alone, I wish there were a better way to get the cure we need without all of the negative side effects.

I'm coming off of a bad Crohn's flare and have been on 40mg Prednsone for 5 weeks now. My doctor is being very conservative and it looks like I'll have another 2 months for the sloooooooow taper down.

I'm up 11 lbs so far and do not want to go any higher. I've got my energy back so I'm going to get to the gym for cardio and weight training a few times a week. Also trying to cut sodium, carbs and fat and stick to a 1200-1400 calorie diet.

Anybody have any luck with diet and exercise while on Prednisone? Weight loss? Maintain?

[MARYBETH]

Ben wrote:

Hi eveyone. Im 26 and have been on Prednisilone for 17 months to help treat my reactive arthritis. I got the red scabby face and my stomach grew quite considerably. Trouble is I came off of morphein and I quit smoking about the same time so i think my body is on a massive purge, shedding all the water i gained, ive had a bad stomach for two weeks now and although im glad to be shedding the weight ive not been able to leave the house and have to stay close to the toilet!!
I know its embarrassing to talk about but im getting so sore and now bleeding, ive tried imodien and all that but nothing helps. How long is this gonna last?

REPORT YOUR SYMPTOMS TO YOUR DOCTOR!
In addition to arthristis, it sounds like you have Ulcerative Colitis or Crohn's Disease....the bleeding is a typical symptom. DO NOT CONTINUE TAKING IMMODIUM TO CONTROL YOUR SYMPTOMS OVER A LONG PERIOD, THE RESULTS CAN BE DISASTROUS.....ever heard of rectal prolapse???

[Pam]

Jessys girl wrote:

<quoted text>
Yes it should unless your still binge eating. After 7 months I started to lose mostly water weight at first and boy did that feel good--lost 12 pounds in 2 weeks. Gradually after that about 2 pounds a week. I have 15 pounds to go to get to my normal weight so I am really thrilled. I do not diet and eat what I want..but I never was a pastry type eater either--just went back to the way I used to normally eat before the predisone. But I had periods where I slept a lot and had chills but that passed. I take multiple vitamin tab daily and Vitamin C and D and Calcium for bones.
It takes a long time to come back but you do--I had a friend that it was 8 months later she started to be her old self again.
While I feel this is a horrible drug I also know without it I would be dead But a note here--the younger you are..the quicker you bounce back. Good luck.

I'm so glad to hear that I have a chance to return to my normal size again. Your comments are very realistic and hopefilled. I am 63 and could not even feed myself or dress myself before the prednisone. Six days after beginning my dosage I was like a ball of energy. No pain, no stiffness! But oh, goodness how I put on the weight! 40 lbs in 6 months, and heart racing, sleeping 3-4 hours a week until I was hospitalized with a suspected heart attack from a muscle spasm due to a lack of potassium. Now I'm coming off the prednisone and will have to make a decision about what to do next, since I must be one of those who cannot take Prednisone.

[Peggy]

Hi: I was recently diagnosed with temporal arteritis. I have been on prednisone 30mg. for about a month, then 20 mg. for about 2 weeks, and my Dr. is now reducing it to 10 mg. My sed rate went from 96 to 19. I am afraid of blindness, as I know you are too. Can you give me a little information as to what you have gone through? I can keep you informed as to what is happening with me. Please contact me if you are receptive, and God bless you.

[gladys USA]

I nearly died, in the hospital for 10 days, of COPD. I could not breath. When I got home, I was on 80mg of Prednisone. The rx was tapered down to zero, using several weeks. I have the moon face that makes me sooo ugly and swollen, the gigantic neck, swollen buffalo hump, hair that feels dead, skin that rips like paper, weight gain, my stomach looks weird and bigger. My brain seems to have been clipped here and there...making it hard to remember things I want to remember. I am a size 3, 5'5", 64 years old. I have to be careful what I eat and what I drink, as Prednisone makes me feel as though I am hungry all the time. I've started just eating celery when I feel so hungry during the day. Today is my last pill. I am hoping that the water will get out of my system, quickly. I am so embarrased with this face that isn't mine, and that is really moon faced, fat....swollen, and painful. Can I take water pills, now that I have just taken my last prednisone for a while, at least?

[FELICIA AUGUSTA GA]

I HAVE BEEN ON PREDNISONE ON AND OFF FOR ABOUT 10 TO 15 YEARS AND I HAVE GAINED SO MUCH WEIGHT, APPROXIMATELY 100 PLUS POUNDS. WHEN MY ASTHMA WOULD FLARE UP WITH THE PREDISONE I WOULD HAVE TO GO TO THE EMERGENCY ROOM AND BE GIVEN IV SOLUMEDROL WHICH IS EVEN WORSE. IT MAKES YOU THROW UP AND HAVE INTENSE NAUSEA AND JITTERS. I HAVE DONE EVERYTHING TO LOSE WEIGHT. I JOINED A GYM, HIRED A PERSONAL TRAINER, WALKED, DIETED AND USED PRESCRIPTION AND NON PRESCRIPTION PILLS TO NO AVAIL. I AM AT THE POINT NOW THAT I AM SERIOUSLY CONTEMPLATING A LAP BAND AND PLASTIC SURGERY. I AM A NURSE AND IT LOOKS BAD TO BE OVERWEIGHT. WHEN I AM ABLE TO LOOSE WEIGHT AND FEEL BETTER MY ASTHMA FLARES UP WORSE. IN THIS DAY AND AGE THERE SHOULD BE SOMETHING BETTER TO USE THAN PREDNISONE. IT IS SO EMBARRASSING BECAUSE EVERYONE THINKS YOU'RE EITHER LAZY, USELESS AND A TOTAL LOOSER. I AM SO TIRED OF THE PREDNISONE, BUT I NEED TO BREATHE. SO WHAT CAN YOU DO EXCEPT TAKE THE MEDS. I AM DEPRESSED, EASILY AGITATED, IRRITABLE TO MY FAMILY, FRIENDS, AND CO WORKERS. THE CRYING SPELLS AND THE ANGRY OUTBURSTS AND THE PHYSICAL CHANGES ARE JUST TOO MUCH AT THIS POINT. I AM 5'8. I USED TO WEIGH 155 LBS NOW I AM OVER 250 LBS. HELP!!!!

[Abi]

Just read this post and it sounds very familiar. Can you give me any positive feedback? Any suggestions for losing the weight after prednisone?

Julia wrote:

Here I am, awake at 4am with insomnia (again), searching for other people with a bloated stomach from Prednisone! The mood swings are terrible, too. While it's comforting to not be alone, I wish there were a better way to get the cure we need without all of the negative side effects.
I'm coming off of a bad Crohn's flare and have been on 40mg Prednsone for 5 weeks now. My doctor is being very conservative and it looks like I'll have another 2 months for the sloooooooow taper down.
I'm up 11 lbs so far and do not want to go any higher. I've got my energy back so I'm going to get to the gym for cardio and weight training a few times a week. Also trying to cut sodium, carbs and fat and stick to a 1200-1400 calorie diet.
Anybody have any luck with diet and exercise while on Prednisone? Weight loss? Maintain?

[Maria]

Not really. Have experienced everything you are talking about plus some. However, in talking to people who are now off of the Prednisone, they say the weight will come off. I think I hate the weight worse than the sleepless nights!

Good Luck!

[Jess]

I know EXACTLY how everyone feels - prednisone has ruined my life. I, unlike all the previous posts do not have RA or Sarcoids or lupis... I have a mystery diagnosis - no one knows what is wrong with me, essentially my body is attacking itself: I've been diagnosed with bilateral, recurring (I've had 5 flare ups) optic neuritis. The only treatment available is prednisone...I began the prednisone battle in Nov 2007 (I received 3 high doses via IV). I've been on a taper (pills) ever since. But, every time I began to taper my body would attack my nerves, the swelling would reappear and I would lose my vision (to the point where I could only make out the big E on the eye chart). My highest dose was 80mg - I blew up like a sausage. At that time, I was prescribed an additional drug, Imuran, which suppresses your immune system so that the prednisone can go in and decrease the swelling of my optic nerve.
I'm currently doing well with my taper - for the first time in a year I'm at a lose dose: 10mg. BUT, my body is totally RUINED. To think I had weight issues when I was 5'7 130 (size 4)...I'm now n easy 180 - I had to buy all new clothes. I have stretch marks (they actually look like claw marks) ALL over. I have no room left to move it's hard for me to bend over and put my shoes on. I totally have the moon face and hump back - to the point where no one recognizes me. Interestingly enough, my hair also felt out (which was weird because I have not read about that side effect anywhere). I also had an increase of hair grow on my face. The worst part is I was totally healthy before my body decided to attack my nerves (I don't even eat white carbs!!) so I am desperately trying to wait it out and I have become indifferent to food, I walk everywhere (and my ankles /feet have just started swelling) but nothing has happened yet. All of my reading thus far suggests that 10mg and below is the magic number, but my frustration only grows when I pass by a mirror and don't even recognize myself. I appreciate all the previous posts because it helps to know I'm not totally alone in this struggle - I'm only 26 and I've already lost a year of my life...I'm desperate to get things back on track.
I'm open to any suggestions / tips. The one tip I can offer is to be open to alternative medicine. I've tried acupuncture and I go to a naturopath regularly. My naturopath, although totally frustrated that he is also unable to figure out what is wrong with me, has done a lot to help me deal with prednisone. I recommend taking L glutamine and probiotics which help my stomach.
Good luck to all - this is not a fun game to play, but one I'm determined to win.

[Beth Buffalo New york]

Jess, I have something similar to what you have, I have been diagnosed with Wegeners Granulomatosis, which is my body is attacking my organs, first started with my ears, I have lost hearing, etc. went to my lungs, had surgery. I have been on steroids for almost a year, gained 30 lbs. I am down to 5mg, and the moon face is going away, but I still see my hump and my belly and boobs are huge. I am not eating much, I am dieting,and I am exercising, so hopefully I will see some wieght come off soon. I hope things get better for you. I am going on year 3 of battling this disease. Have you had a a/n/c/a blood test to check your protein levels? prednisone does not work alone, you may need a chemo therapy drug with it like I did, that seems to be the only thing that worked for me. Have you Dr. if he has not done so already do the blood work for Wegeners see what happens from there. I wish you well.

[lupuschick08]

sue wrote:

noone is going to want to hear this, but i lost weight on prednisone. could be more related to the hospitalizations for pericarditis flareups. have been trying to go off it so slow it is ridiculous(am on 2 mg now) i have a cold that won't go away. very frustrated.

How did you do that?

[CJean]

I saw your post and I just had to respond. I am 42 and diagnosed with a very rare autoimmune disease called Churg Strauss. I had high dose IV injections for several weeks and then went on 180 mg in Jan 2009 and I have currently tapered to 12 mg daily. I was also on Cytoxan but have replaced that with Methotrexate. I WAS NEVER EVER more than 110 pounds (unless I was pregnant). I do not know how much I weigh now because I will not let the doctors tell me. I just began having my 10 year old daughter weigh me once a week. She is not allowed to tell me or anyone else what my weight is but she is to tell me how much I have gained or lost since my last weigh in. I do not recognize myself anymore. I was always accused of being anorexic (I wasn't) and now I am just huge. I had to buy new clothes every two weeks because the weight gain wouldn't stop. I can tell you that I am now a size 16. I was always a size 2 my whole life. I have begun a very strict 800-900 calorie a day diet. We'll see if that helps. I have searched everywhere on the internet to find out what happens when you stop taking or take very low dosages of prednisone. I can not find anywhere if people go back to normal - lose the moon face, big boobs, and all the other fun stuff. I am so sorry you are going through this at such a young age. It really sucks (I am saying this because I am tired of people telling me "You know, attitude is so, so important" I would rather someone just say "That sucks that you are going through this and I am sorry." Good luck to you!

Jess wrote:

I know EXACTLY how everyone feels - prednisone has ruined my life. I, unlike all the previous posts do not have RA or Sarcoids or lupis... I have a mystery diagnosis - no one knows what is wrong with me, essentially my body is attacking itself: I've been diagnosed with bilateral, recurring (I've had 5 flare ups) optic neuritis. The only treatment available is prednisone...I began the prednisone battle in Nov 2007 (I received 3 high doses via IV). I've been on a taper (pills) ever since. But, every time I began to taper my body would attack my nerves, the swelling would reappear and I would lose my vision (to the point where I could only make out the big E on the eye chart)., but one I'm determined to win.

[ms rose]

theres not much hope. its all about what your goals are. im 34 and i was on 20mg prednisone for 6 months. i tapered it down myself since my sister was in the medical profession. the pulmonologist was prescribing medications non stop without testing me to see how i was developing. my kidney dr. told me i was in remission and i took her word for it. its been 6 months now and i feel great. but i used to be 120 pounds and im now 160+ ponds. i just started to exercise and eat well 2 months ago and i still have a bloated belly.sometimes it goes down a little but other times its bloated agin. reality is no salt/sugar intake and exercise like a mad woman. find a partner and it ill be a lot easier