Saw my neuro yesterday and she confirmed I am in a flare. She recommended I do IV steroids for 3 days then a two week taper. Of course, today I feel 60% better (gee, how much did stress account for?). So I have some questions for those of you who have been through this:

First since they have already done all the paperwork, should I go ahead with the treatment, even though I feel much better?

Second, how bad might I expect to feel? I took a month-long treatment of steroids for RSD 30 years ago and remember having an upset stomach. But the doctor said I may feel hyped and jittery.

Third, the doctor also said she wasn't 100% certain I would feel much improved with the steroids since I have a multitude of "subtle" symptoms (mouth, tongue, throat, leg & arm weakness, minor foot drag, numbness and tingling in fingers, toes and thighs), not a major loss of function (one arm going limp).

Hi Catch,

Well, I don't know if IV steroids would actually do you any good if you're already feeling better and especially since the steroids have their own side effects to deal with on top of your symptoms.

IV steroids are designed to help you get through an exascerbation with lessened symptom load. 3 days is not that bad and a two week taper would make it all tolerable. But I had side effects that far exceeded what benefit the steroids provided. Metallic taste, pain, severe hic-cups for up to 72 hours, injection site problems, not to mention that it lowers your immune system and makes you suseptable to everything flying around out there for up to 28 days. Now, that's my experience. It may be different with you.

Only you can tell with your own body if you really need IV steroids. Don't worry about the paper work already being done. If you want to cancel, cancel. That's life in medicine.

Best of luck to you and keep us informed.

Catch,

You hired a doctor. Do you trust her to do what is right for you? If so. follow her advice.

If you don't trust her, get a new neuro.

Her protocol is completely standard for flairs....

As for how you will feel? That is completely a personal thing....some people feel WONDERFUL on steroids, I , unfortunately, am not one of those people! HOWEVER, if my doc says let's do steroids, I am the first one in the chair!

Good Luck!

I did an oral taper in August (I've never had the IV steroids yet)

Eat yogurt just before or with your oral steroids. It should help you not have a tummy ache.

Not sure what you can do about being jittery. I had some Ativan left over from the year before when I was taking the steroids. If I got too jumpy or started to bounce off the walls, I'd take a half of a pill. I did a lot of drawing, crocheting and computer solitaire games during that time.

I was taking the steroids because I had really bad vertigo at the time. It would hit me and knock me down and wouldnt go away for an hour or two, and I never knew when it was going to hit. Luckily it hit me twice while I was at the doctor's office. Once right in front of the doctor. Once when he was out of the room.

I'm hoping I'm not about to get hit with that vertigo again. Last night I was feeling kind of off...like the room was going to start spinning. I can deal with numbness and weird pains, but I cannot stand vertigo. So, I'm hoping that I'm not about to have a little flare of the sicky dizzies.

Just a vote of solidarity and thread bump, Catch.
My neuro decided against 'roids during my first flare so I can't give you any first-person advice. He was a great doc... I'm sure he had his reasons.

Please keep us posted.

Just some advice if you decide to go through with the 'roids:

1. Take an antacid like zantac before each infusion.

2. Have an anti-anxiety (like xanax) med on hand in case you get overly anxious from the steroids.

3. I got the metallic taste in my mouth during and right after my infusions so keep a sour type hard candy around like lemon drops.

I just went through the 3 day solumedrol treatment in December and definitely had my ups and downs during and after it. I also retained a ton of water and gained 14 pounds in a few days (it went away after the treatment was over). I did not do a taper.

Good luck and I hope you feel 100% better!