Monday, September 28, 2009

don't fear the steroids

been doing alot of thinking over the past few days about how maybe i tapered off steroids too quickly the first time around. i was so paranoid about side effects and the affect on my diabetes, as soon as I got that first remi infusion, I stopped taking the pred. Now in hindsight, i wonder if i would have enjoyed my summer more if i kept taking the pred. then again, we were hoping the remi would work all on its own, but it kinda sucks how tired and sick I was and how much I missed out. If you're gonna miss 4 months of life in NJ, you're better off doing it during the crappy winter months when everyone is a hermit anyway :)

i've been on 40 mg pred every day for a week now. it keeps me awake and i've had some big bursts of energy, but today I am so zonked out. i think i overdid it this weekend and am now paying the price. the worst symptom this round has been the night sweats. i wake up every night like someone dumped a bucket of warm water on me. at least this time i'm able to get up, change, and get back to sleep. back in may, if i woke up at 3 am, that was it, i was UP.

also, the biggest blessing of this round of pred is that all my mouth ulcers disappeared immediately. those symptoms were absolutely miserable. i changed my toothpaste, tried to avoid crunchy foods, tried a ton of nasty-tasting ora-gel and dubious health-foody natural treatments, to no avail. 1 day of pred - sores gone! nice.

part of my focus on the side effects of pred is also due to my terrible vanity. i've always struggled with my weight, and before this last flare, was doing great on a diet and had lost 30 lbs and was on track losing 1-2 lbs a week. i was getting my blood sugar stable and under control, and really enjoying all the yummy raw veggies and healthy snacks and fiber-riffic foods. that's all mostly gone out the window, and I'm so frustrated with food. now it's even more important to watch what I eat, but I am a total slacker. i know i'm flirting with moonface and acne and a hump, but dammit i want junk foods. blech, i know better, i want to be better, but I just don't do it.

the side effects of pred are scary, but largely manageable. and hopefully i don't have to worry about some of the worst ones since I'm not taking them for years and years. i guess after the last 4 months I'm more willing to risk and tolerate them in order to get the way-cool benefits, like being awake and not in the rest room. i'll probably overlap the humira and the pred for a while and maybe in a few months the next flex sig will show an improvement in the inflammation. i'm just gonna give these bad boys time to work this time.

2 comments:

~Jodi~ said...

I can completely understand the depressing effects of prednisone! They are the worst ever! I guess you just have to keep telling yourself it won't last forever. And... the rewards of the medicine are so much better than the crazy awful side effects. I guess in the end it is all worth it even though going through it... it may not feel like it.

Hillary said...

I feel exactly the same way you do about pred. I won't take them. I felt worse on them, than off. I'm already mean, I don't need help. ;)