Experience with Prednisone???

[ms_flo]

You'll have to overlook my zeal on this topic, I had a very bad experience with prednisone.

1st - Prednisone is a miracle drug for a lot of people. I think organ transplants would be basically impossible without it.

BUT prednisone is a curse for some of us, and not everyone will take you seriously if you have problems.

Please, please, please OP... if you think you are having problems, let your doctor (& any future doctors) know. It sounds like you only have 1 or 2 doses left, so I understand if you want to just finish off the meds & move on. But, always let health care workers know you had a problem ("I am sensitive to corticosteroids."), especially if someone is giving you a shot. I have been amazed at how quickly they will try to give me a shot of steroids without even mentioning what it is!!

!!WARNING!! !!WARNING!! !!WARNING!! !!WARNING!!
corticosteroids can precipitate manic episodes--as in bipolar disorder (aka manic/depression)
This is what the poster who mentioned "talking photographs" was referring to. Patty Duke's 1st experience with her bipolar disorder was brought on by a steroid shot. I was lucky to not have this side effect although my GM is bipolar. (There is a genetic predisposition to the disorder.)

corticosteroids affect your "tolerance level" for seizures
Another poster mentioned this. I had "head-turning episodes". That was the term the neurologist used. It was very scary.

corticosteroids (even in small amounts) can cause Cushings Syndrome
(Cushings Disease is caused by a tumor--either on the adrenal gland or the pituatay gland)
An endocronologist told me I had a brain tumor (pituatary) because there was "no way" the small amount of prednisone I was taking could be causing all my symptoms. He was WRONG.

corticosteroids affect your hormone levels
I was actually lactating (brought on by the prednisone, not a baby) & growing a beard at the same time!! Yuck!

corticosteroids can make you ravenously hungry
It is hard to explain the kind of hunger that steroids cause--you feel like you haven't eaten in days, even if you just finished an entire lasagna.

corticosteroids can change the way you gain weight
In about 2 months I gained more weight than I did in either of my pregnancies. Plus you gain the weight in "unusual" places--back, face, etc. Almost 10 years later I still have fat mounds on my back, even though I long ago lost all the weight I gained.

Okay, deep breath... Forgive me for going on & on. I really don't have time to type so much this morning, BUT it's a really sensitive topic to me. I don't want ANYONE else to have to go through what I did. Of course these are not "common" side effects, but it does happen. No one wanted to take me seriously when I tried to tell them I was having trouble, because these problems are "rare". I just wanted to scream, "Just because only 5% of the population has these problems, it doesn't mean that I'm not in the 5%!!!" If you have problems, make your doctor listen to you or find a new doctor.

 

[ms_flo]

Originally posted by joshsmom
I've spoken to his doctor numerous times but I've been told he has to be on the Prednisone as part of his post transplant regimine.

joshsmom,
Your post came up while I was typing mine. My heart breaks for your situation. (My cousin has been on prednisone for a transplant for years & years. I felt so guilty that I could stop taking it & she couldn't.)

It sounds like your doctor has tunnel vision. The fact that your son can't stop taking prednisone doesn't necessarily mean there's nothing you can do for him. Have you been put in contact with any transplant support groups? I bet there are other moms out there in the same situation who could give you good advice. (Why do doctors act like you are the only person on the planet who has ever had to deal with this situation?! Can you tell I get frustrated with doctors?? ) Just seeing a counselor might help your son & you. God bless you as you deal with this situation.

 

[Alice28]

I have two doses left to take; one this morning and one tomorrow. I have only been on it since last Friday, so it hasn't been a long term medicine for me.

I am no longer itchy. And I feel fine this morning. But I will take my last two doses per instructed.

I really don't feel *that* out of whack as some of you have had experience with; I appreciate all of your input, I really do. I just feel wound tight (I kind of have a type A personaility to begin with) and I think that this medicine combined with the stress of the upcoming weekend, a depressing week as far as the war in Iraq goes (my DH is in the military although he's safe and sound at home right now.....as long as this war goes on, the likelihood of him having to go increases....I think that has been on my mind), tax time, etc. etc. etc. I think this medicine just exacerbates my reaction to some of these things. Not in a way weird way, just jittery.

It's funny about food- I find myself very hungry, but nothing tastes good. I went to the store yesterday to stock up and then cooked this great dinner and homemade cookies and it just tasted funky. Hopefully I won't have the side effect of gaining weight!

Thanks again everyone~

 

[ScarlettO]

I was on it for a long time and I got the "moon face" and extreme mood swings. I would wake up very early with lots of energy and talk non-stop. Luckily I changed Doctors who tried other drugs and was able to get off prednesone.

 

[Micca]

I have had it on two occasions for a severe sore throat. I had an extremely small amount that lasted just a few days, and it made me feel so much better so quickly that I wouldn't have minded feeling a little kooky.

 

[grinningghost]

LOTS of experience with Prednisone here. I've had IV and oral Prednisone a few times for my MS. I HATE it. It makes me super hyper on day one, and then I crash something awful. It actually made my MS paralysis worse one time. It also makes me break out all over my face and neck and it makes me itchy. And it makes me fat.

I'm one of the ones who puts up with alot of inconveniences of MS because I hate steroids so much. My neuro tells me some patients call begging for steroids, while I'll try like heck to ride out an attack before I'll go on them.

Oh, and the IV Prednisone gives me an awful metallic taste in my mouth too.

I sure hope you have a good experience with it.

 

[Tiger Lily 03]

DH was on up to 40 mg prednisone long-term for ulcerative colitis. Most of what was describes was what he went through. (Except, lucky for him the pics didn't talk to him--moods were pretty rugged though.) He experienced incredible weight gain/swelling. After long-term use it was time to come off the prednisone and he had to do so very slowly as well. I guess it was said that he could not continue long-term use, or more accurately, it stopped working for him. Medically there was nothing left for him so he had his surgical correction (colon removed) and life is much better with most medicines no longer necessary.

 

[LuvN~Travel]

I actually was on this just last week. I had had some wild reactions to a steroid before, but was gladly surprised that I didn't this time. (I had broken out in a 'running' rash from who knows what (been moving, no telling what caused it), and was scratching myself silly from the itching and pain.
Good wishes to you while on it.
Kim