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The Survivor
10-06-2012, 07:25 AM
Hello everybody at WHL! :)

Anyone here take Prednisone for their Lupus? I think everyone does right? I think. Now, does anyone experience very bad swelling as a side effect? I do! My cheeks are the main body part that swells and its so embarrassing. I know I'm kinda overweight but the Prednisone swells me up. Is there an alternative medication to taking Prednisone? I know this is something that I could ask my doctor but she makes it look like Predisone is the only way. Please, help!

jmail
10-06-2012, 08:39 AM
I've done prednisone for most of the last twenty years, off and on, with an almost continuous use for the last 3 years, usually low-dose of 5-10mg, but with the ocassional 60mg with a taper. It wasn't until my last round of high-dose that I had the "moon face" issue, and my blood sugar got way out of whack. I've also gained weight over the last few years. I'm not aware of any direct replacement for prednisone. Generally speaking, prednisone is one of the better ways, with the least side-effects, so long as you tolerate it OK, pay attention to its side-effects (probably need to do a calcium supplement, etc), and if it controls the lupus. Next up the ladder of "commoness" would probably be plaquenil, which is now my "main" lupus med. I'm still doing low-dose pred, but I'm on 5mg a day now, instead of 10 or 20. Next up would be like MTX and others of that ilk, that suppress the immune system.

You definitely should consult with your doctor(s) about any med changes, or any concerns you have about your treatment. The most difficult thing for me 20 years ago when I first was diagnosed with RA, was to question the doctor. Not to question his credentials (those are on the wall), but to educate me on what I should expect, both from the disease and any meds I take. Lots of times, a doctor seems to assume that you're as educated about your illness and meds as they, the doctor are, when they just say "prednisone is the only way". Your doc doesn't realize that if they would add in maybe a "because you tolerate it well, it controls the nephritis, and I want to save the plaquenil for later, if needed" that it would go a long way to answering your questions. So, it's your job to prompt the doc for those statements. If the doc doesn't answer your questions to your satisfaction after several attempts, it might be time to change doctors. I finally found me a rheumatologist (and a neurologist) who isn't a prima donna. Only took 20 years... tic |;^)

Corella
10-06-2012, 08:28 PM
Oh yes preds can cause swelling - I am carrying 27kgs extra weight 10kgs of that is from preds - however, I will emphasise that MOST of this is my fault as my blood sugars become unstable when I take any dose over 7.5mgs and I ate to reflect that.

I would urge you strongly to do the following:

1. Get a dietician referral and work out an eating plan to suit the steroid medication because you will feel hungry and if you do eat to suit your hunger you will gain more weight. If you eat the wrong things then it becomes nigh on impossible to satisfy your hunger. You need to eat every couple of hours and have protein snacks as opposed to carb snacks but a dietician in the early stages can set you up in good habits.

2. Exercise if you can - I have had a huge problem with my Sjogrens, I force myself to go to the gym, I work my butt off and spend the next day in bed too swollen in my joints to do anything else. So I have learned to accept a new kind of normal and I am going to ask my personal trainer to work out a plan for me to take in to consideration my illness and limitations. If you can get to a gym or swimming - find your new kind of normal and adapt to it. Exercise can help with many of the side effects of steroids.

3. When you buy clothes - dont be hard on yourself if you have gained weight - buy yourself nice stuff whatever size you are because if you try and diet into your favourite clothes rather than buy a bigger size, you are sending yourself the wrong message that when you are bigger you are not worth investing in. I have gone up a clothes size so when I buy clothes, I buy 2 sizes - a size 12 and a 14 so I can wear my favourite stuff and I have it in a bigger size as well.

Honestly, I SO understand at how you feel with the 'moon face' as it is known when you are on steroids but by taking control of the situation, you can help yourself considerably. Steroids have unwanted side effects but they also have huge benefits, I cannot get off steroids I am on a maint. dose of 5mg and I cant even go to alternate days. But they stop my joints swelling and I get some saliva production so it is a trade off.

Take control and invest in yourself and things will seem a lot better, I promise you.

tgal
10-06-2012, 09:16 PM
Oh yes. The higher the dose the more swelling there is. Try to eat better and lower the salt (I say this as I eat chocolate because they make me want food!!), it will help. While you can do things about the actual weight gain from the steroids some of the effects (such as weight gain) some things like the moon face may be something you have to deal with until you get on a very low dose. Just remember that it is much better than allowing the disease to ravage your body

Mica
10-07-2012, 11:47 AM
Oh the moon face! Everyone of us know what your going through. When I was on a long of prednisone I was so sick and like 90pounds but it made my face and stomach so swollen. I constantly had people ask me if I was pregnant. Now I deal with the constant dry mouth and swollen cheeks, it's not so bad prednisone is a really effective and cheap treatment for lupus. I agree Corella, I own 3 sets of wardrobes. 1.is my normal weight and swelling feeling pretty good wardrobe 2. is my lupus is flaring and can't hold any food wardrobe(I am having to restock this one now because I made the mistake of giving it all away when I was in my #1 wardrobe) 3. Is my bigger clothes where I have gained a bit more weight and am really swollen

magistramarla
10-07-2012, 07:56 PM
Not everyone can take it! I can't take any steroid because I have a history of avascular necrosis. Steroids can make that much worse.
When I read about how great people feel with it, I sometimes wish that I could take it. When I read about the bad side effects, I'm glad that I can't!
Hugs,
Marla

chikititalinda
10-08-2012, 06:34 PM
Hi Marla, how do you treat you're flares? My drs still give the damn poison despite the avn because they think the risk outways it because of my organ involvment. Although they run shorter weaker course, There has to be another way

The Survivor
10-09-2012, 09:09 AM
So would I have to exercise more to get rid of the swelling, including the moon face, or would it go away over time on its own?

And thank you all for your advice.

tgal
10-09-2012, 10:43 PM
So would I have to exercise more to get rid of the swelling, including the moon face, or would it go away over time on its own?

And thank you all for your advice.

When they lower your dose of steroids the moon face and other swelling will go away as long as you haven't done like some of us (me LOL) and eaten everything in site and let yourself put on weight as well. The actual swelling and moon face itself can't be helped until the dosage is lowered though. Sorry but I promise it is better than the alternative (I promise I am living with the alternative at the moment and I am and was already on 40 mg a day!)

magistramarla
10-10-2012, 09:37 PM
Hi Marla, how do you treat you're flares? My drs still give the damn poison despite the avn because they think the risk outways it because of my organ involvment. Although they run shorter weaker course, There has to be another way

Linda,
That's why my rheumy in Texas went straight to MTX. I'm no longer taking it, and the rheumy here only sees me twice a year, so I just deal with flares on my own - I only take Plaquenil. I'll go back to my old rheumy next spring.
Hugs,
Marla

The Survivor
10-13-2012, 09:21 AM
Is 15mg of Prednisone considered as a low dose? And does Prednisone itself cause you to gain weight?

jmail
10-15-2012, 07:19 AM
For me (not a doctor), low dose would be 5 or lower. Duration has to be considered, and plays into the equation also. There's been a few times that my docs have given initial high (60+) doses that are then "stepped down" back to a low dose over a couple of weeks' time, and other times they started me on a mid-level dose, such as 20 or 30, and kept me there for a few weeks and then stepped me down. The circumstances of the symptoms and doctor's diagnosis detemine what they prescribe. You might need just a bit more help temporarily with the 15mg dosing. Perhaps your nephritis is rearing its head?

I'm not sure if the steroid itself is directly responsible for weight gain, but it will definitely increase your appetite, and also will affect your blood sugars, which contributes to weight gain. It affects your bones and skin also. There are probably other processes at work with the pred, and your doc should be able to answer any concerns you have. There's no harm in asking your doc, even after the fact.

The Survivor
10-18-2012, 10:06 AM
I have taken 60mg of Prednisone at the most. And I know this is a little off topic but when I took this much Prednisone it literally drove me crazy....Has this happened to any of you who were or still are on high doses of Prednisone?

jmail
10-18-2012, 02:23 PM
For me, when they'd bump me up to 60+ of pred, I would be almost giddy after a couple of days, and would feel like I was invincible (which can be a bad thing). I'd get all kinds of things done around the house. After the last few years, going up that high would increasingly make my blood sugar spike, extremely high a few times, and that would make me feel clautrophobic, paranoid, etc., especially the last time I did it. I would also gain weight & bulk that hasn't come off yet... If you have a blood glucose test meter, be sure and check your sugars often when you have to bump up...