Sjogrens World Forums

Please, please tell me how likely it is that I will gain weight from a 1 month course of Prednisone? 

The script starts at 30mg for 4 days then tapers down to 5mg a day.

Is it unreasonable to think I can take this stuff for just one month and then be better for a while?  Does that sound like something that happens?

The doc said I should note if it makes a "night and day" difference and then note what dosage (during the tapering off period) is no longer helpful.

This sounds like he is planning I will continue to take it after the month is over.

He also said "it will be very revealing" if the pred does NOT help.  What might that mean?  Of course I didn't ask at the time because I was busy trying not to cry.

I'm worried I already know the answers to these questions.

Thank you for any info!
Janna

I think it's normal to gain weight from a month's worth of Prednisone.  I take 5 mgs every day but am on 10 mgs now because I'm in a flare.  I've gone way up before and never gained weight, but I think I'm not the norm (what's new?). 

I would think that he wants to know what mgs will best help you feel better.  I'd be surprised if he put you on more than 5 mgs/day if he keeps you on it.  That's a good dose and doesn't really effect you negatively.

My mom's been on prednisone for 30 years for her asthma and her body doesn't make cortizone anymore.  If she doesn't take prednisone, she'll die.  So, I've always been worried about being on long-term prednisone, but I'll be honest, I'd rather have quality of life now and less time at the end than not having any quality (which would be if I didn't take any Prednisone) of life and more time to be in pain at the end.  That's my philosophy, tho. 

Good luck.  I hope you can get out of some of that pain.  On 30 mgs, I feel like super woman. 

I did not gain weight with a month's course of pred.  Don't know why though.  Even a nurse friend of mine was surprised.  Perhaps it is the low dosage and being spread over 30 days rather than a higher dose for a shorter time

For some reason, even though my doctor warned me that weight gain would be a very probable side effect from a steroid taper, I lose weight on them.  I recently completed my 2nd Medrol taper and each time I'm on this medicine I drop weight.  No idea why.  The first steroid taper I did back in October was on Prednisone.  I had bad side effects from the Pred so from then on I got put on Medrol for bad flares.
Since the Medrol taper two weeks ago I convinced my doctor to leave me on 4 mg per day.  I feel so so on that dosage but I really think I'd benefit from 8mg per day.  But if you knew my doctor you'd know it was a miracle I got left on the 4mg.
Just like Syng4hym, on 30mg which translates to 24mg of Medrol, I felt like superwoman too.  I did things I only dreamed of-- like clean my house from top to bottom and organized everything.
I think the doctor meant that if you improved on the steroid it would be more conclusive that your problems are all from Sjs/Lupus and not from something like fibromyalgia.  I hope you get some relief on the Prednisone :)  Too bad we can't stay on these medicines forever without bad complications.

I took Prednisone about 15 years ago when I had Bell's Palsy. I started at a high dose (I can not remember the actual dose) and slowly the dose lowered, I was on it for max 8 weeks. I had the moon face, I was puffy and looked swollen and I DID gain weight, quite a bit. BUT it saved my face from being paralysed.

Unfortunately you probably won't know how your body will react to it until you try it. The overall benefit might out weigh any weight gain if you do happen to have any.

I too have been going through this conversation in my head for myself as well. I see my Rheumy on Monday and I am thinking that he too might want me to try prednisone. I have already been taking Plaquenil for over 2months. I honestly go back and forth on the issue for myself. Some days I think that I would take anything to help my pain and improve my quality of life. On the other hand some days I remember back to being on the drug and thinking that I never want to take it again.

I hope that it all works out for you.

The last two times I took prednisone I didn't gain more then 1 or 2 pounds, but I knew that I needed to curb my appetite, unfortunately I can go for days without sleep when I'm on prednisone, like a tweaker.

Hi JannaLee:

I take prednisone when I have a break out.  The doctor prescribes 5 mg for 2 days, then 4 for 2 days etc. to taper off.   The ulcers will go away at the end, then back again in one week.  My doc. doesn't want me to take Prednisone for more than one week at a time.  I did not gain weight in the process.   Taking it contineously for one month sounds a little excessive.  But then your doctor is a professional. 

So now adays, I start with 3 mg for one day, as soon as the lesions occur, and down to 2 mg the next day.  Seems to work. 

The frustrating thing is, the lesions keep on coming back.  I can feel the tinkling before they come on, so I take the 3 mg of prednisone right away, early suppresion.

Everybody is different.  I hope this helps!  I hate using drugs.

Pegasus

I gained weight like gang busters! 4 to 6 lbs a week! Hopefully taking it only a month, you'll be able to drop anything you do gain. I haven't had any luck losing my extra, but then again I never could lose weight by eating less. I used to work it off. Now I can't hardly move, so nothing gets worked off. I should give up my hamburgers and pizza, but that's not likely! he he.

I was on 10mg of prednisone for years...I dont think it did anything...last year after my IVIG and bad reactions, I was given some sol-medrol and noticed how much better I felt so I asked my doc to leave me on 4mg a day of medrol...then, I added another 4mg...I did help, I actually lost weight and felt a bit better....Now, 5 months later, my face looks fat, trouble losing any weight without eating and my hair loss is more extreme than ever...Im going to try and wean off the medrol. If I didnt have gastroparesis, Im sure I would be very overweight, as I dont have an appetite. Just try the prednisone and really, really try and watch what you eat. Portion control as we know is the key. Drink lots of water try any type of natural diuretic like more postassium etc.. good luck to you!!! hope it helps you. (prednisone did nothing for me-medrol worked much better)

Over the course of several months I gained about 5 to 10 lbs on 4mg of Medrol.  As soon as I got down to 2mg it started coming off.

Janna, I think it sounds like your doc has a good head on his shoulder. He is doing a very prudent "burst and taper" that will give him some good information about your bodies amount of inflammation and response to steroids.

You may or may not gain a few pounds but if you exercise more and watch your food intake you should be able to keep a lid on things. Just remember that it is only for a month and that all of us are different. The good thing is that you may not need as much sleep so you will be more active. Get the spring cleaning done at night!!!!

Will be interested to see how you feel after this month. Irish ;D

Janna,

Just hoping that you feel better from this new treatment.  You are a sweetheart and I hope that this will bring you less pain and some better days ahead.

Anna

For whatever this is worth.  Once in a while, I believe we need to clean out our system.  I have been going to seminars at a local forum that encourages natural therapy, and they really believe in the cleansing diet.

So I had a colonoscopy last November, took this terrible tasting  liquid to clean out before the procedure.  I followed through afterwards with a cleansing diet- 3 lemons with 1 quart of water, 3 tablespoons of natural maple syrup plus a dash of cheyenne pepper.  I drank this all day, supplemented with clear chicken or beef broth - for 8 days.  I lost 8 llbs.  It is now 6 months post cleansing, I am 10 pounds lighter. 

I was not hungry through out the process and of course consulted with all the experts- some of them are physicians from this forum while on it.

I think sometimes we are taking too many pills, the body is having a tough time handling all the toxins.  Cleaning out once in a while is probably a good idea.  I think I am going to do this maybe twice a year. 

What do you think of this idea?

Pegasus 

I'm a big fan of including natural treatments (e.g., fish oil, turmeric, meditation) in our health plans, and I'm looking forward to hearing more about what you're trying, Pegasus.  But I have to say that, personally, I'm pretty sure that all those pharmaceutical pills are what's keeping my poor, malfunctioning body going; I see them as supporting my system, not taxing it. 


As for the cleansing, I defer to Dr. Weil:

The body has its own self-cleaning, self-purifying systems. The best ways to protect yourself from toxicity are to avoid taking toxins into your body and to keep those systems in good working order. For example, the kidneys are a key component of our blood-purifying apparatus, and you can best protect their health by drinking enough pure water and avoiding dietary stressors such as coffee, alcohol, and excessive protein. In general, I favor relying on the body's own resources for detoxifying, and I urge you to learn about them (I discuss them in my book Natural Health, Natural Medicine).

You also should be aware that none of the many supplements and herbal products purported to detoxify the system and purify the blood are necessary to good health. Neither is colon cleansing. The entire lining of the colon sloughs off and is regenerated every day. If you are eating well, drinking enough water, and getting enough physical activity, your regular eliminations will be sufficient to keep the colon clean and in good working order.

http://www.drweil.com/drw/u/QAA400502/Eliminating-Toxins-With-Massage.html

Thank you everyone!

I appreciate so very very much all your energies and sympathies on my behalf! 

Started Prednisone today and have had two 10mg doses so far and (of course) do not feel a single bit better.  I'll be taking another dose shortly and hope to see improvement tomorrow?  Yes, I know I'm asking for immediate relief, it's just that I NEED to be up and doing instead of laying about!  Honestly I'm so sick today I can barely stand up.

You are all the dearest people in my life!  There are not adequate words to describe my gratitude for this forum and your acquaintance.

Janna
PS I've been debating whether to admit what a "head-case" I am and own up to consumption of; 2 bananas, 2 oranges, 6 pretzels, and 2 V8 servings since lunch!! I've been so worried about the weight gain, I think my obsession has made me imagine I have increased appetite before the pred has started to work!  Ugh!  It's going to be a long month!

Give it a couple more days. When I went on my first dose, it took about 5 days and then I felt great (compared to what I had felt, which was that I couldn't get out of bed and slept for 14-20 hours a day). Great was I could get up and have meals, and walk for a few blocks, and sit out in the sun (which isn't an issue for me). 

BTW - I'm now on prednisone as well, and doing much better than what I just said.

JannaLee, I hope that you feel relief soon! Please keep us posted on how you are doing with the Predisone, I would be interested to hear.

Take care :)

Hi Janna - you have always been so thoughtful and encouraging to the rst of us when we have needed it.  Hope you are feeling some benefit by now.

I'm about to join you on the pred weeks as my rheumy has just upped the dose of methotrexate and given me 5 weeks of pred again.  I hate it as it makes me wide awake at night (and exhausted at work next day) and last time I developed s NEED for cake!  Any cake, but especially good solid ones like madeira and fruit cake.  I would fine myself smiling at the thought of cake and staring at the cake aisles in the supermarket!

Let me know if you have any good ideas for sleeping/avoiding eating everything in sight!  XX Ailsa

I can't believe that this discussion is happening when I am agonising about the pros and cons of taking prednisone. At my last appointment with my doctor, and after a lot of discussion, I stopped taking the 5mg of prednisone that I had been taking for three months. I was not happy to be taking it and thought I would cope without it.
My doctor was willing to see how I would go without it.
Well let me tell you all that I didn't realise what that little tablet was doing for me. Within a week I was in agony with joint and muscle pain and a very sore neck. I have had a feeling of being choked for weeks. Now that gland below my ear is very sore and swollen. (I can never remember it's name!) I have put up with it for long enough. I'm starting to feel very depressed because I can't seem to do anything.
I have an appointment tomorrow and I know he will put me back on prednisone again, and I really think I will not protest about it this time. We need some quality of life and if this is what we need to do, maybe we have to accept it.
I put on weight in the time I was taking it, but I know I was eating too much. I was sooo hungry all the time. But having just been diagnosed with Sjogrens I told myself I had an excuse for overeating. I had a syndrome! This time I will need to be very strong.  You are very lucky to not put on weight.
I hope you start to feel better, I think you probably will feel the difference very soon!

Hi, Ros. 

Have you tried any other medications?  I took prednisone at first, but only until the plaquenil had time to kick in.  For me, the plaquenil (hydroxychloroquine) has done a pretty good job of alleviating the symptoms that you mention long term, and I only have to take prednisone during a flare.  It sounds like the low dose of prednisone helps you a lot, though, so it would make sense if you decided to just stick with that.

Best wishes!

Yes Ros,

Dragonfly asks a good question.  Are you taking Plaquenil?  If you can tolerate it, and the majority of us can, there is certainly benefit without the pred. side effects.

Janna

Janna I hope that the pred brings you some relief and on our titrate down you find a dosage that works for you.

I think the Dr wants to know if it is not helping is that if it offers no relief then the issue most likely isn't inflammation based as that is what pred is used to treat(along with allergic reactions)which is why it is often given in cases of asthma flares or bronchitis/pneumonia.

I have been on it almost 3 yrs and my weight goes up some occasionally(never more than 5 pds or so)and its usually when I come off my maintenance dose and go higher for awhile then taper down(the gain comes on during the taper for whatever reason)One thing I have found is if you are craving something(but you know its not what you think you should be eating so opt for something else..then something else..and again and then finally end up eating what you wanted to begin with-its usually just easier(and less calorie shopping :))to go ahead and eat what you are craving (in moderation)rather than munching then giving into it.

I like sugar when my dose is up-and I just go ahead and have a few cookies or a small ice cream rather than 6-7 things that are "good" for me then eat the cookies..cause I always give in!LOL!So I figure by caving quicker I am actually in the long run SAVING myself calories-cause I wont stop til I get what I originally wanted.

Good luck and I hope you get some relief soon-I would call the Dr if you dont notice any improvement in the next 3-4 days-that should be long enough for the pred to be working as its usually pretty quick acting(which is why it comes in just a 5 day dose pack)-and if you aren't experiencing any relief he may want to get you off the med instead of continuing when its not helping.

DragonflyC:
Your points well taken.

For each approach, there are many opnions.  Normally our body should be able to cleanse itself.  However, for those who are very constipated, this cleansing maybe helpful.  She has Fibromyalgia - and has been trying to keep all potential toxic materials out of her system- including not using paper towels, use only organic cleaners in the house, keeping her urine at neutral pH - her whole life is revolved around her pain.   When I asked her about her BM, she said this has been a problem for her in her entire lifetime. 

For those of us who does our number 2's (BM) everyday, that shouldn't be a problem.  But otherwise, it maybe helpful.  For me, it feels like a fresh start. 

There are people who go to detox centers- to clean out, not detox for drugs.  They swear by it, so I tried it once.  I was surpised how well I tolerated it. 

Hope sharing this experience is helpful

Pegasus

Thanks so much Pegasus!  I agree and can certainly see the benefits of your suggestion!

I so appreciate this "think tank" atmosphere and so many various different ideas and experiences and opinions!

Janna

Hi Janna,

I think it might be possible to curb the weight gain if you closely monitor your calories and your exercise.  

I've been on prednisone for over a year, I started at 60mg and I've tapered down to 15mg.  I didn't notice my weight gain until after I was on it for a couple of months, and I eventually gained 40-45lbs.  My face did get round pretty quickly, but the rest of the weight took a while.  But I also started eating like a horse because I always felt hungry (I frequently purchased those Pounder bags of pretzels...probably not the best choice!).  I think if you can control your eating you might be able to avoid the weight gain.

I started exercising and monitoring my calories back in January, and I have managed to lose almost 20lbs.  I even had to increase my prednisone from 7.5mg to 20mg at one point and I didn't notice a weight gain.  I think if I had made this effort back when I started taking it I could've have avoided having to buy bigger clothes!

My aunt takes 3mg of prednisone daily and has been on it for a couple of years.  She is very fit and she doesn't appear to have gained any weight, but she does have  a slight moon-face.

Good luck!

- Erin

P.S.  One of my favorite filling snacks is a bag of 94% fat free microwave popcorn.  The entire bag is between 200-300 calories.

Hi Janna and Dragonfly, Would you believe that my doctor has never prescribed plaqinel for SS! He can understand why it would be of benefit though. We must be a bit behind over here. That is why this forum is so wonderful. He is good in that I can make suggestions that I have read on here and he will look into them for me. And he is a very good listener!

From what I have read, I think 5mg of prednisone is a small dose and I wonder if it would cause long term problems if you stayed on that level.

I am going to talk to him about the plaquinel today. He did mention the eye thing when we talked about it last time. Can your optomistrist keep a check on that or do you need to see a opthamologist?

How are you feeling Janna? Is the prednisone kicking in!

Hi Ros,

The thing with the eyes is a certain test you need to take every year.  It's a peripheral vision test and a special machine is needed.  I'm pretty sure an optometrist can administer this test, the trick is finding one with the machine.

I sincerely encourage you to press for Plaquenil from your rheumy.  It's considered the standard treatment~ as far as I know.

I woke up feeling quite terrible this morning.  But a couple hours later I noticed I could turn my head without neck pain. 

This is not good enough.  I went to a meeting today from 4-6pm and now I'm all done in ~unable to cook dinner but sitting up on the sofa. 

Since this is only the second day (just took today's last dose a minute ago) probably I shouldn't worry.

Erin,

I had to laugh about your suggestion to control my eating!  Therein lies the rub!  I can barely control myself when I DONT feel hungry.  Heaven help me when I do!!

Thank you for the suggestions.  Do I need to eat less than I normally would?  Does pred. trigger your body to store more fat than normally?

Thank you all so much!
Janna

I only see an optometrist.  I am confident that he is monitoring my vision sufficiently.  The eye problem is really rare; some people on the boards have mentioned that they don't even monitor for it in the U.K. anymore. 

Ros, I'm so glad to hear that you have a doctor who is willing to listen and learn.  I've found two doctors (my GP and rheum) who are the same, and I wouldn't trade them for anything!

--C.



P.S. Erin, I completely agree about the popcorn!  We have an air popper and make huge bowls of it several times a week with a little real butter and salt.  It's delicious, and we feel like we are eating a ton without taking in too many calories.  Now that spring is here, we're eating lots of fruit, too.  I picked up some strawberries at Stop and Shop yesterday that were amazing.

Hi, Janna.  The 4mg of prednisolone actually took about 3 weeks to work.   I was very weak and woozy and the Plaquenil hadn't had time to kick in (that took 9-10 months for me).  Also the 4mg dose definitely caused a weight gain--but only about 10lbs.  I am now (after one year) down to 2mg every other day and holding my own.  The weight has started coming off.

Hope that helps :)

Thanks Babs.  I'm feeling a little better but not enough yet.  Today is day 4, so it's probably still too soon for me.

Hi Janna Lee,

I take 5 mg. of prednisone sometimes 10 mg. and I did gain weight. I started taking it around the Holidays last year so that sure didn't help. I've never weighed more than 141 and I got up to 148. I started on a gluten free diet (not for weight loss but to feel better) and in three months lost 16 lbs.

I'm a little more active now also since it's getting warmer outside so that also helps. Also had gone off my Lexapro because of the cost so my depression was worse - so let's just eat more!

5 mg. is a low dose so I don't think you should worry too much.

Take Care,

Harmony