Saw eye doctor today... - Multiple Sclerosis Message Board

maxmadd · 06-19-2008, 01:43 PM

new symptom on Rebif turned out to be optic neuritis. Even though I have been dx with MS I have never been diagnosed with ON. This is all new. Neuro says he may prescribe steroids. Hoe do people feel about steroids? Lots of side effects or no? Thanks for listening. Hopefully my Rebif is working...I guess I am just having a down day.
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angeles0209 · 06-19-2008, 02:20 PM

Angeles HERE!!!

I have been on 1000mg a day for 3/4 days straight. Beware it gives me at least horrible mood swings and puffs you up. I hate them but they have worked. Even with the horrible side effects. I personally walk around like a roaring LION. Sorry, about the news of ON.

Nenu · 06-19-2008, 02:59 PM

Steroids can be quite beneficial. Just don't expect immediate results from them, they can cause side effects of their own. Some report a worsening of symptoms while taking them, and then a great improvement afterwards.

They may or may not work for you, and your symptoms may completely go away, or you may be left with some of the symptoms or all of the symptoms.

For me, they worked wonders (RRMS) for dealing with the symptoms.

smashly86 · 06-19-2008, 04:27 PM

I found that the steroids really did the trick for me as well. But I would have to agree that some of the side affects are not too fun (I gained 5 lbs in 5 days from water retention and swelling). But, on the plus side, if you experience chronic fatigue, like most of us do, in some people in can help reduce the fatigue. That was one of the good things as well as helping me recoop from my relapse.

april1848 · 06-19-2008, 05:12 PM

I'm sorry you've been diagnosed with ON. That's something I haven't experienced yet. For me, the IV steroids did a lot of good. I had them right after I was diagnosed, and I didn't know anything about MS or steroids. I expected them to work right away (or at least by the third round) and they didn't. But after three weeks or so, I felt a lot better.

For some people, the IV steroids turn them into Superman or Superwoman. That didn't happen to me! I didn't get anything done that week. The worst side effects for me was my stomach--get yourself an acid reducer and a stool softener. Also, you'll have a bad metallic taste in your mouth starting quickly after the infusion is started, so bring some hard candy to suck on! I also got bloated, but it went away pretty quick. They'll usually follow up your IV steroids with oral ones, to wean you off. I felt so sick a few days after starting those that they took me off of them completely. Others get sick from that, quitting cold turkey, but I didn't.

Also, make sure you're well hydrated, so they get a good vein on the first try, and make sure you have healthy food around the house, since your appetitite will be out of control! I hope you get great success with them for your ON!

Steroids will lose their effectiveness somewhat if they're used a lot for a long period of time. I did turn down another round this February, and thankfully, my symptoms eventually went away on their own. But for ON, I would DEFINITELY get the steroids!

Keep us updated, and good wishes!