Yeah the mental energy/willpower is a huge thing, and it's easy to get discouraged. That's my problem. Last year I lost 35 pounds while on prednisone, but I've been a lot sicker this year and need to get things under control again. Ifeel that it really affects me mentally though, and that's a big obstacle. When not on prednisone, i have no problem getting out and exercising, and when I am, it's just... I have an enormously bad attitude and don't care I guess. Then I wake up and realize that I DO care, and I've set myself back so far already. It's also the constant hunger from it, and I was always used to eating until I felt full and I never gained weight from that until Prednisone, because I never feel full! So I am trying to use more common sense there.

When I was at 40 mg I couldn't lose. Remember that prednisone makes you retain water and it seems the higher the dose the more water. When I got below thirty mg I started losing without even trying. You will also have better luck if you are well enough to exercise. Ever the optimist I will exercise for even just 2-3 minutes. My doctor thinks that's great. As I get healthier of course I can exercise longer.

I lost 4 pound last week on 24 mgs of pred. I can now do weights which I do every other day. And I ride my exercise bike a bit (not long times maybe six minutes two or three times a day) Trying to increase that.

Yeah, 40mg seems some kind of cutoff point for me too, below that I do better with eating/exercise/etc. and my sleeping is a lot better. Right now I'm at 40 but then will be going down a bit soon. My sleep schedule is terrible, and that doesn't help matters at all, but I do try to take short walks whenever I can and I think my endurance is improving, I was in the hospital for a week last month (after already being sick in bed for a week) and the lack of moving around just made me really weak and crappy feeling, as well as gaining weight again. Then I retain so much water from the prednisone sometimes that taking a walk makes my back hurt.

It's doable though. Last spring I was on about 20mg and I went for a walk every evening, gave up soda, tried to eat healthier, lifted weights, and lost weight. Motivation is a big factor too, and lately that's my problem.

I May be going on Prednisone.
 

Hello All,

I am so glad that after an exhaustive search, I found this site and so many people dealing with the same health issues/obstacles that I am.

I was diagnosed with Sarcoidosis in 2001 after a routine chest xray showed abnormalities. after the Xray my docs believed what I had was lymphoma because my Sarcoid had an atypical presentation. But after the lung biopsy they confirmed it as Sarcoid.

Since my Sarcoid wasn't blocking my air passages they did not have a treatment plan for me. Not meds - just wait and see.

About a year ago I had a bad allergy season. I've always had 'weird' allergies. Spontaneous hives, etc. The hives never lasted more than a few weeks, but they were weird because I could never figure out where thy were coming from.

Anyway, last year I saw an allergist because during my attacks I noticed swelling in my neck lymph nodes.

The allergist said: 'Allergies doesn't do that'. He referred me to a pulmonologist. The pulmonologist said: Sarcoid doesn't do that'.

Anyway, I got frustrated and didn't return to see a doctor until about a month ago.

In the last year my lymphnodes have swollen in my neck, arm pits and groin. Painless. They vary slight in size. The large ones are about the size of large grapes.

In the last month I have had almost every test under the sun. All my blood work has come back in the normal range. Mamogram - clean. HIV - negative.

Tomorrow I will have the lymphnode biopsied.

This should give me a definitive answer as to what is going on. It's scary being diagnosed, waiting to hear, etc.

Of course, my ultimate hope is that I don't have lymphoma.

The doc says that if it is Sarcoid, I will have to go on Prednisone for a while...6 months. That seems like a long time.

I fear the side-effects, including the weight gain.

I wanted to introduce myself to you all. This seems like such a supportive group. Thanks for listening.

-R

thank you!
 

Lilycat,

I'm so sorry you have to be on prednisone at such an early age. I wouldn't worry about the weight too much, as active as you are once you taper off the prednisone, I'm sure the weight will come off too.

As for the stretchmarks, there isn't much you can do, but they do fade with time.

A low carb diet doesn't mean no carbs. You just don't want excess. And you want to be eating the right carbs, which you probably are if you are running. You don't want a lot of processed sugars and you want carbs with fiber as opposed to those without.

You should be aware that you can get diabetes from taking prednisone. The higher the dose and the longer you take it the greater the chance, that's why the low carb diet is important. I've been taking prednisone for about thirteen years and two years ago I got prednisone induced diabetes. Not fun. : (

Also you need to make sure that you are taking a calcium suppliment preferably with Vit D while you are on prednisone. Prednisone also interfers with bone mass and you can end up with stress fractures or fractures. But your doctor probably told you that.

With all those horrible things said, remember that you must need the prednisone or your doctor wouldn't prescribe it. It's better to be alive and have some quality of life than to have a perfect body. : )

Good Luck!

Jeanbean

My doc wants to try it for my RA as well - I told him NO WAY.... I'm already on Anti-depressants, and I have huge self esteem issues - linked to my weight and appearance - no way I could cope emotionally with the weight gain. So I'm just hoping that the Methotrexate will do it's job

What's your Prednisone dosage?

Hi, I'm new here and just located this site today. I've been on prednisone for since Dec 31 of 2007 after renal failure. I was diagnosed with Minimal Change Disease (a childhood kidney disorder) and was at about 20% kidney functioning at that time. I was on high IV prednisone while in the hospital for about 5 days, then started on about 90 mg when I went home. When the lasik (water pills) finally kicked in, I lost 52 lbs of water in about 2 1/2 weeks. My dosage of prednisone was slowly redused over the next few months until I was down to 5 mg in May of 2008 when I relapsed and they had to bump it up to 15 mg again. I've also been on many other drugs all of which have given me side affects from mood swings to liver damage, I've gained about 40 lbs being on this drug of satan! I was doing ok again but relapsed again in Dec of 2008. I started to retain water again but the oral prednisone and lasik was not working to stop the protein loss which caused the water retention. The doctors decided to give me 3 days of high dose IV predenisone. It did work and I lost 25 lbs of water in 2 weeks. This is a great thing, but I just hate this drug... it is so nasty. I was just diagnosed with a mild form of Lupas last month as well. I am now slowly being tapered off prednisone as my doctor knows how much I hate it and how my body just does not like the drug. I'm at 12.5 mg per day and will reduce my dosage to 10 mg next week.

I have been reading on this thread that a low carb diet works well for weight loss for people on prednisone but is hard on the kidney's. Is this right? Since I have kidney problems, I really need to know this. Also, since being on 12.5 mgs of prednisone, can I lose weight on this low dosage? I've also read on a Prednisone site that Orlistat (the same drug that's in Myalli) helps with weight loss while on prednisone. Has anyone tried this?

I'd definitely talk to your doctor or a nutritionist about what diet is best for you if you have kidney disease. I guess it depends on your definition of low carb. In my diabetes classes they stress low carb but it's not like the low carb diets like Atkins. You still have plenty of carbs and they emphasize those that have fiber over those that don't. With your kidneys I'm guessing you are worrying that lower carbs means higher protein? I've heard plant proteins aren't as hard on the kindneys so maybe you could try eating beans and other legumes for your protein.

As for the Orlistat I've not heard anything about that. I'd be a bit concerned though adding more medications since I assume you are taking a bunch already. Especially if you are having liver issues.

I also think at 12 mg you should be able to lose weight. I'm at 24 right now and as long as I work at it I can lose weight.

i took predisone for about 9 months (which is an excessively long time for the meds, usually its only prescribed for under a month)
im not sure how much weight i gained, i actually didnt even gain it until i started tapering the first time.

it also depends on why you are being prescribed for it. i have crohn's, and drastically lost weight until i was about 122 and couldnt physically function.. so it helped me get to a healthy weight again but then kept going.

most of the weight gained is water weight because it causes you to retain more i believe..
ive been off of it for about a week, and lost a little bit of weight, mostly around my face/cheeks.

ive heard two different opinions about losing it after stopping the medication..one of which- it will gradually all be lost after you discontinue.
and the other- you wont lose much of it after, but you wont continue to gain drastically, so it will be easier to burn off.


also, i think if youre under 5mg/day it doesnt affect weight very much, if at all.

another few things to keep tabs on while on it (because its a very destructive drug) is your bone density, skin conditions (acne etc) and emotional issues (anger and depression)
they may be off the weight topic, but still very important to know. id recommend taking caltrate (calcium supplement) which i take because i started getting severe bone pain and if not, eventually your bones could possibly become very fragile, brittle and thin.


gardinia- are you sure theyre cramps and not bone and/or joint pain?

New member here and I am sooo glad I found this thread (via Google search). I started prednisone tonight for a potential viral infection that presented dermally so something needed to be done fast.

I never been on the med before and I am scared to death of the side effects, especially…you guess it…weight gain. I also have Multiple Schrosis and will need to watch how the side effects will interact with what I’m already going through.

A couple years ago, I lost about 40, pounds (dress size 14 to a 6) that I gained due to PCOS. My diet is pretty low carb and free of soy, gluten, refined sugar, most other grains, and several other things I cant have.
Thankfully, I will be on this for 24 days: four days at 60mg, four days at 50, four days at 40 and so on until I’m done.

I know I will need to tighten up my belt when it comes to diet for the next month (carbs, sodium, sugar, etc). Its nice to see other women here in the same boat but wish we didnt have to go through this at all!

New member
 

Hi everyone! I can't tell you how happy I am to have found this site. I googled "Prednisone" and "sugar" and "salt" and this was one of the links. It is truly a godsend! No one told me to restrict salt or sugar, although in all fairness, I have a scheduled appointment with my wonderful nutritionist (she's an orthomolecular nutritionist and registered homeopath who literally saved my life many years ago). She will be coordinating with my neurologist to devise a personalized diet and supplements plan for me.

I have an auto immune disease (well, two that are related): arteritis temporalis and polymyalgia rheumatica and have been on a daily dose of 60 mg Prednisone since March 13, although it feels like it's beeen months. I have an extreme version of the condition with neurological complications. I hope I beat this. They plan to test to see if I've had a small stroke this past week.

I have already put on a lot of weight, especially in my face and neck and am no longer recognizable.

I've read through all the posts here on this subject and want to thank everyone for sharing and especially those who have written great motivitational messages (NEVER GIVE UP!)

I will regularly check back here. I'm having eye surgery on Friday, and occasionally go blind in one eye, so don't know how often I will visit here, but I will when possible. It means a lot to me to be able to know there are others in similar circumstances.

Jonny

I have been off and on prednisone for 18 years now. I was diagnosed with Systemic Lupus and prednisone was considered the best/safest choice of treatment at the time. They failed to tell me it is very addictive (can give you a great euphoric sense of strength), it can cause osteoporosis fairly quickly (if you aren't taking extra calcium), and of course the weight gain, moon face and redistribution of body fat.

A few years ago I was able to lose 25 lbs using the south beach diet and walking. I decided to go back to school and the weight slowly crept back up. I'm trying again, and it is so hard! I am on just 4 mg a day and I am still struggling with my weight. The longer you've been on the drug the harder it is to lose, so if you have a chance to reduce your dosage, do!

I also have interstitial cystitis - chronic bladder irritation. I am not suppose to eat anything high in potassium like bananas, cantaloupe, prunes. Now I see that those things would help me with my weight loss. So I try to balance these things out.

Good luck to us all, may they find a cure for our ailments that doesn't include prednisone.

I have had the week from ****! I was told the laser surgery was a success, and yes, the vision has shown some improvement, but it is not clear yet. I'm keeping my fingers crossed.

My neurologist had decided last Thursday to start reducing the dosage of Prednisone, but the eye surgeon strongly disagreed and said I could go permanently blind in both eyes, so I'm still on 60 mg per day.

After the surgery, they kept me in the hospital for 10 1/2 hours, running tests, examining me, etc. A lot of time was spent just waiting in a room (thankfully, a good friend was with me), just waiting for the doctors to return.

Besides being physically exhausting, it was emotionally draining. I am spiritually a very strong person. They keep telling me I could die at any moment, but they tell me and then say -- and there is no way we can prevent it -- so why the *** do they tell me this? Dutch bedside manner is an oxymoron! Anyway, they told me they can't figure out why I have certain complications and are now thinking I may have a brain problem -- like a tumor or swelling or something else. This was such a shock to hear that I just burst into tears and was overcome with anxiety.

See, I'm not at all afraid to die. I don't want to -- I'm not ready to go! But what I am afraid of, is becoming helpless -- losing the ability to think or communicate or have control of my body.

I remain in good spirits and I figure all I can do is try to get the best out of every day and continue to set achievable goals and make plans -- anything that will improve and enrich my quality of life.

So now I am planning to have my whole garden redesigned so that if/when I become less light-sensitive and the weather warms up a bit more, I will have a garden paradise where I can lie outside this summer. I moved into this house three years ago, and the garden, while very nice, is not to my taste. It's overcrowded and stocked with plants that are not to my liking and is formal, etc. The large garden "shed" looks like a little Swiss chalet and has water, electricity and light. My plan has been to eventually use it as my art studio, but that is really future dreaming. In the meantime, it just doesn't fit with my style. My garden designer is going to work it into the overall look I want and cover it with climbling roses and other plants, so it blends in. My garden idea is to have a magical storybook garden -- English cottage style, with lots of sensory details -- many roses, a bright array of flowers and many scents. It will also be wildlife-friendly, with hedgehog shelters, bird houses, and plants that encourage butterflies, bees, birds, frogs, toads, etc. I will have a water feature put in and add some salamanders (I'm part American Indian and salamanders are my spirit animal) and tiny fish. I am so looking forward to this! I think it will be a healing place!

I am also planning to order some flatscreen aquaria -- sort of kitsch, I know-- but a standard aquarium would be too much maintanence and my four cats would wreak havoc. The flatscreens hold real fish (they need to be small and not crowded) and require only 15 minutes of maintanence per month.

I plan to order them today. They are also good Feng Shui.

Oh, and now the doctors are saying I may have had multiple TIAs, of a difficult kind. I have only been able to find one kind of TIA when I google. Anyone know anything? They are planning to arrange yet more tests and scans to determine brain function and also decide whether to start me on blood thinners.

SHEESH! I continue to morph and now look like a cross between John Goodman, Peter Laurie and maybe Eddie Murphy where they made him fatter and older. I have always been a very attractive woman -- letting vanity go has been a real challenge -- I'm ready for Halloween and would win any Halloween contest!

Have a good day, everyone. Iclaise, I hope you lose some weight again. You are obviously a very tenacious person. I'm so impressed about your previous accomplishments with the diet, walking and going back to school. Don't despair!

Jonny