Prednisone - the misery drug
Lots of people have to take prednisone, the "miracle steroid" which helps so many people live. It's great, it's wonderful, but the side effects from it are freaking awful.
I'm not talking about small dosages, or just taking prednisone for a week or two. I'm talking about friends of mine who have had to take dosages ranging from 60 mg to 15 mg, sometimes for years at a time.
Frankly, I'm shocked that there's not a page devoted to this. What about acupuncture? Can it help? What about other alternatives? And no, I'm not talking about how acupuncture can reduce swelling, thereby reducing the need for prednisone, so you feel better. I'm talking about palliates for the side effects of prednisone.
As with any recommendations of medication, make sure to check with your doctor first, to find out if there will be any clashing with drugs that you take already. And please be aware that seemingly innocuous "natural" remedies can make medicine less effective, so do your homework on that, also. For example, did you know that grapefruit can decrease the effectiveness of many medications, including seizure meds?
If you know of some palliatives for symptoms of predisone, please email me at moretoastplease@yahoo.com and I'll put them up.
Preparing to take high dosages of prednisone
From a reader:
"Some preparation for what you may experience on 30 mg/day of prednisone: Feeling euphoric, even manic, and having a lot of trouble sleeping. Ask for Clonazepam or something else to help you sleep. I take .25 mg of Clonazepam and 20 mg of elavil (for chronic pain/sleep) every night, but I am taking half that dose of prednisone (15 mg). You may require more meds for sleep - I take more when on more prednisone. You need to sleep! Be sure to call the doc right away if you can't sleep. And when/if you taper off prednisone, do it VERY SLOWLY.
On prednisone, you should feel a lot better, right away! Nothing will hurt, and you will be able to move mountains and leap tall buildings. "
From another reader:
"Actually I finally got the book, "Coping with Prednisone", written by someone I actually met at Aspen music festival 30 years ago - Eugenia Zuckerman, a flute player who used to be married to Pinchus Zuckerman. she is very attractive and is also an arts correspondent for ABC.
She developed a very serious lung condition which had ONE treatment - prednisone. All in all, she was on it for 18 mos. Her sister is a neonatal specialist of some kind and they decided to write a book together. They are very good at describing the emotional ups and downs, but when they get into ways to avoid the side effects, they really don't have any! They mention avoiding carbs but then recommend living on rice cakes. She is very careful not to mention how much weight she gained or whether she ever appeared on camera with her moon face, or how many concerts she had to cancel.
She also describes the agony of tapering off prednisone (luckily her disease didn't come back) but she has no earthshattering advice except to BE PREPARED for how bad it is - and this is something docs just don't do - they don't prepare you, because if they did you wouldn't comply with treatment.
I guess. Anyway, I should write a book on it, but I don't have any advice either except to be prepared!"
Dry mouth
Drinking water is actually bad for dry mouth
Biotene dry mouth toothpaste
Oral Balance Gel (to be used in your mouth at night)
There are RX drugs for dry eyes and mouth: Evoxac and Salagen.
Dry eyes
Puralube ophthalmic ointment (last thing before sleep at night)
Other things for the eyes: Punctal plugs and punctal cauterization (done in the office of ophthalmologist).
Most drops don't make any difference. There are new drops, Restasis, which are cyclosporin, and they help some people with Sjogren's dry eyes. (Might be connected.)
There are RX drugs for dry eyes and mouth: Evoxac and Salagen.
Anxiety, edginess, heart palpitations
This is from a reader:
"I have been taking prednisone for a couple of months now, at doses up to 60mg/day - down to 15 mg now - yay! There are a lot of side effects and I don't know anything that will mitigate the majority of them. I did have a side effect that I would describe as anxiety, or extreme edginess, with heart palpitations, etc. I felt really crazy. I called my doctor about it, and he prescribed potassium - yes, very simple. Within 2 doses I felt like myself again. I am still gaining weight from it, but at least I don't feel
so nuts. You can take fairly large doses of potassium provided you don't already have kidney problems"
Osteoporosis
Here's a link that talks about the weakening of the bones effect that prednisone can have on the body.
Bulletin Board
The Prednisone and related RXboard on RXList is an interesting bunch. Not much advice, and quite a few complaints -- about prednisone-caused diabetes, blindness, and so forth.
Cushing's Syndrome