Knew it was too good to last...darn

[Erin]

Well, today I stepped down again in the prednisone taper. I'm down to one pill a day for two more days and then 1/2 a pill for 2 days after that and then I'm done.

I had a nice little vacation from the numbness for almost a week. That's apparently ended as of today. I woke up and both arms were asleep...they woke up, but my fingertips are still all tingly and I've been awake for 3hrs now. The tops of my feet feel tingly too.

darnit!! darnit! darnit!!!!!! I was really enjoying not being numb all over for the first time in a year and a half. argh!!

If it werent for the side effects to the prednisone, I'd be calling my doctor and asking for a refill to the prescription. I've really only noticed one truly bothersome side effect, and it's just enough to keep me from begging for more steroids. The other side effects I can deal with, but not that particular one (we'll just say that I've gotten a lot of reading done on the new Harry Potter book while dealing with this side effect)

I was really hoping the steroids would make the numbness go away for a few months or years... oh well...at least I had a break from the numbness and the back pain for a week. (the back pain hasnt returned yet, so maybe it helped that more than it helped the numbness)

[calcal]

Hi Erin,

Were you expecting the steroids to resolve your neurological issues? Steroids may shorten a relapse but I don't think they've ever been shown to change the overall outcome when they're taken for a relapse except possibly in optic neuritis. So you might be expecting them to do something that they have never been shown to do, and that is lead to permanent improvements. They may shorten an attack when taken for a relapse but that's about it. And they have pretty serious consequences in terms of bone density, organ damage, etc. too.

I haven't had steroids in years and my doctor wouldn't give them to me for sensory issues unless those problems were seriously impacting on my quality of life or ability to function properly. Even then, he'd prefer me to just ride it out since they don't change the overall outcome anyway. Was your numbness impacting your ability to function? I know sensory issues can seem minor to people, but honestly, when my leg went numb a while ago, it was amazing how problematic it was. It wasn't just a matter of being "numb", it literally felt dead. It even made walking difficult because I couldn't figure out how much pressure to put on the leg since I could no longer feel it. It made giving myself shots easier since I couldn't feel the needle on that leg, but still, I am very glad that the sensation came back. There is "numb", but there is a whole other level of numbness that I experienced. Not fun at all.

I'm not sure how long you've had these problems but have patience, your body is working hard to heal itself from the damage. It's amazing what you can potentially recover, all on your own. Hopefully in time, you'll find yourself making improvements all on your own.

[karlee]

I agree that steroids work best (so I've read) on ON or upper body symptoms.

Years ago I was on Prednisone. I got the metallic taste in my mouth and the sleeplessness, but by far the worst symptom caused by the P was that awful moonface. I looked like a chipmunk.

And it did nothing for me - not even temporarilly.

Later I tried a 5-day solumedrol drip. Metallic taste for ten days. No results.

Because the steroids can cause serious damage, I'd save their use for something other than sensory problems.

[Erin]

I wasnt expecting them to do anything for the numbness...they were prescribed to me so the doctor can figure out what's been causing my vertigo. It was just one of the "good" side effects that my numbness went away for a few days. I just wish that had been a side effect that woud stick around.

I still dont know what's causing my vertigo. I havent had any vertigo since at least monday afternoon, altho I felt a bit "off" yesterday and took some meclizine "just in case" I was going to be spinning.

I get to go to the neuro next week and he's going to evaluate me and see if he can use whatever answers I give him about what's been happening since my regular doctor gave me the steroids last week. He'll either tell me the MS is causing the vertigo, or I'll get to go to an ENT for another work up to see if the vertigo is being caused neurologically or if it's physical in nature.

The doctor did tell me that I might feel some improvement in a lot of my problems, he did tell me that most of the improvements would only last as long as the steroids were in my system.


I was just enjoying feeling good for a week on the steroids and am disappointed that it didnt last. But, I knew when he gave me the steroids that it might give me a temporary break from my symptoms for a couple of days. I just wish it would have lasted longer. Too bad there's too many side effects to the prednisone for it to be used regularly.

It did help my optic neuritis. I feel like I can see just a bit better than I could a couple of weeks ago. I still have a teeny bit of diplopia (double vision) that's kind of annoying when I look off to the right, but something feels different with my ON eye and that's the one problem that I'm hoping the steroids did some improvement to. I hope that improvement sticks around.

I actually do NOT want to continue to take the steroids, because of one particular side effect that just drives me bananas (it makes me pee! Constantly!) and I think I can deal with some sensory numbness as long as I'm not having to run to the potty every hour.

It was just so nice to not feel like I'm wearing a tight wetsuit on my legs and arms for a week. Plus the fact that my back has not hurt since a day or two after I started the taper...and my back pain was probably more bothersome to me than all my symptoms other than the vertigo.

So, even tho it didnt permanently take away the numbness, I'm happy that it's done what it's done. I can deal with the numbness...I just hope I dont get the vertigo or back pain or vision symptoms back once the steroids get all processed out of my system.