Wednesday, October 24, 2007

I Hate Steroids

I know some people love them because they give you energy, and we all know how MSers need energy, but I hate them. Within the first year of being diagnosed (well, 10 months, but who is counting?) I went through steroids 4 times and hated it every time. The steroids make me sick, crazy and fat--in that order. Each time I did them I figured out that I gained 13.7 lbs, which brought me to a grand total of 55 lbs of weight gain--YIKES! Very few people can gain that much weight and not be considered overweight, and I am no exception. At my highest weight I was only at the high end of what is considered "normal" for my height and I felt like a fatted pig heading to slaughter. And now without further ado, my 3 reasons for hating them:

Ohhh, the heartburn! I never get heartburn. Never ever for never never and ever. So I didn't know why my chest felt like I wanted to belch flames, and this with the Zantac that they give you. I guzzled Maalox and took the maximum of it and the Zantac, maybe even over it, but still no relief. I drank milk, water, and one time only vanilla shakes--nothing helped. It is just something you have to suffer through. Even after the steroids ended (I did them for 5 days) it took a long time for my poor, burnt up stomach to return to normal. They also make everything taste like CRAP. Even if you have nothing in your mouth, your mouth will still taste terrible. So terrible that throughout the night I had vivid and disturbing dreams about eating foul things and woke up once licking my pillow and another time spitting on my pillow to get the terrible taste out of my mouth. I learned to keep mints in my bedside table for when I get an attack of shitty-steroid-mouth while sleeping, and would wake up often to eat another one when taste would start messing with my dreams again. For those of you who have never had to go through the steroids and can't believe anything could taste as bad as steroid mouth, I have one suggestion for you: go lick the bottom of a very dirty cat box and see how good it tastes. That is probably the closest thing to it, yet I will still put my money on steroid mouth tasting worse.

Rev your body up as much as you can and keep it there for 5 days. Drink pot after pot of coffee, smoke about a carton of cigarettes a day, do anything to keep you as wired as possible and tell me how you feel after 5 days of that. Heck, even after 2 days I start feeling the crazies attack me. I know some people stay in the hospital for the steroids, but I can't stand to. They make me want to run laps around the city and trying to keep me in bed would make me crazier. I read somewhere one person's take on steroids, something like, "first day clean the house, second day jump off the roof..." and I think that nailed it. And as crazy as the being revved up is, the coming down can be just as bad. I didn't do the oral taper the first time and I crashed so hard afterwards I could barely move for 2 days. I also felt like I was on a bad acid trip, things looked wrong... I don't know how to explain it, just not a very stable feeling. Then the last time I did them, after about 3 days of the oral taper I "went crazy" and cut my wrists with a razor blade. 5 Days in the loony bin gave me plenty of time to decide that I will never do them unless I lose my vision again--nothing will change my mind on this. One trip to the loony bin is enough in one lifetime!

Imagine the most hungry you have ever been, where everything looks, smells and tastes exquisite. Or the worst case of the munchies you have ever had, where you could not stop nibbling on stuff and just wanted to inhale everything in the kitchen. Now add cravings that block out any other thought and you have a recipe for a fat ass. One time it was dairy products, milk, cheese, ice cream, but mostly milk. I drank so much milk I thought I was going to have to go to the hospital to have my stomach pumped, then the ice cream took its place and all I could think about is what I could possibly put ice cream on that I had not thought of yet. I can't forget the attack of The Chunky Peanut Butter that held me in its grip for the longest of any of the cravings. I gave up putting it on bread or apples, I just grabbed a spoon and the vat o' peanut butter. I suppose if I had more self control I could have fought these craving and not gained the weight, but when food tastes better than you have ever known it to it is so hard to resist.

I think this has summed up my feelings about steroids pretty well. If I ever feel too healthy, sane, and skinny I may consent to do them--if the attack it bad enough--but I don't see that happening... ever.



This is such a vivid and accurate description of the IV steriod experience. I've been there, with the exception of the wrist thing.

Great post!

trrish said...

I realize I'm late to this party, but I had to comment. This weekend I finished 3 days of IV solumedrol and I am crazy.

Crying, depressed, disoriented, can't think or work. I was looking around for other's experiences, and did not find much that described my experience until I found this post of yours.

I left a message at my dr.'s office today asking if this was normal for post-steroids. I used them once before, but that was for 5 days and was 6 years ago. I can't remember anything much other than thinking "I WILL NEVER DO THAT AGAIN." But I did.

here's my spotty analysis. I think when an episode comes on, there is a fear accompanying it that is basically not just "when" will this end, but "will" this end. I had a terrible MS month in March, after 8 pretty good ones on Tysabri. So when they said "let's have you do 3 days IV steroids", I didn't argue. 3 days was supposedly better, free ativan and prilosec for the accompanying freakouts and stomach crap.

Was up for 36 hours the first days, slept a bit the third one. Then completely crashed the next couple of days. Now, my symptoms are returning and I am a mental basket case. There is an upside. I find that having my brain not function very well gives my life a kind of simplicity that I am really not used to. It's as if my IQ dropped 50 points so I am easily...entertained.

I told my office I am out until sometime next week. I literally cannot do my job.

I'm not fat yet.

Anonymous said...

I hate steroids too! So very much. Thank you for writing your post, I relate to what you have written so much. I just finished 7 day of iv solumedrol last Saturday and then tapered off for about a week... i gained 12 pounds in four days... I ate everything in site and I too felt like I needed my stomach pumped.. I continued to work through this... and it is a miracle I didn't do anything really thought, rage, over emotional, elated, deflated.... and now almost a week of being of the taper, I still can't sleep, I am having crazy anxiety... and my mind is like constantly pushing forward feeling no rest, calm or relief.

I had four enhancing lesions on my cervical spine, so I said, "okay doc" but I knew it would such... I just hate how they turn my whole emotional center inside out and upside down... irrational, I feel really irrational when I'm on sterodis... averything is intensified....

i'm so tired of this process...

Jen said...

Steroids make a person nuts. I just finished another recent round and I kept telling people, "They're steroids. They're not aspirin or Tylenol caplets. It's not like drinking a couple of cups of coffee...."

My mom kept suggesting to drink some warm milk or take a warm bath to get to sleep...Ha ha! I told her the only thing that gets me knocked out towards the end of the taper-down is klonopin, and it's a high dose! Ambien CR stops working and I lie awake with my mind racing. I count backwards (which supposedly makes a person drowsy), but the whole process is like a metronome in the background of my mind, keeping time: "I can't sleep...99....This sucks....98....blah blah blah...42....I'm never doing steroids again....41..."

Anyway, I was browsing your blog and I really enjoy your candor. It's annoying for me to tell people I need to be near a bathroom in case I immediately need to pee or crap, and I don't like explaining that sometimes I have trouble swallowing---- feels numb and strange in my throat. But I'll tell you because you said some very revealing and courageous things yourself in these posts.

I just started my own MS blog about a week ago...come have a look. My husband is going to add advertisements when I have a little more content. We're all different with our MS, but we can all relate in certain ways.

Keep courageous......Jen

Jen said...

PS: Tried to add the URL for my blog with my "identity", but I don't see any link,

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texan in oklahoma said...

wow thanks for sharing ur story i just got stung by the wasp 4 times and had to do the 21's of prednsione it drove me nuts i got a new job and i couldnt be happy for myself about the job and i noticed i was so snappy and cranky all the times and my throat was closing up and i smoke cigatrettes it makes it tastes like shit i felt like everytime i smoked my mouth was on fire . now im done with it and now am having bad acid relufx and am in hurry for it go away so i m drinking sprite instead of coffee and switched to ultra light cigarettes so far it seems to be working i wonder how long does that acid refulx lasts after finishing the 21's ??? fuck steroids they suck like hell!!!!!!!!!!!i will try to remeber it and if doctor try to rx me agian i will scream his head off to find something else unsteriod period!!! it even made me cry for first time in years and so depressed unforgettable