IV solumedrol as preventitive for relapses

[ruthiepoo]

I finished a 2 day course ofIV solumedrol 2 days ago and today had to come home from work due to fatigue, muscle pain and some vision difficulties. The vision problems have resolved but not the fatigue and muscle aches. It feels like my neck and torso have been used as a punching bag. I'm concerned about this because my neurologist wants me to start regular IV treatments one day a month to prevent further exacerbations. My employer has been fairly understanding thus far but I think they might have a problem with my being incapacitated like this for 2-3 days a month...is anyone else having the monthly IV treatments? Can anyone give me info on this, is it helping?

[CureOrBust]

You were looking fairly lonely on this thread, so, even though I dont get IV steroids (thats what I assume is solumedrol), whenever I have a relapse, I take oral prednisone (75mg/day). Maybe your nuerologist would be willing to meet you half way and would consider oral prednisone instead; just a thought. It actually gives the complete opposite type of side effects in that some people feel euphoric etc. I have problems sleeping when on it (ie a little like an amphetamine effect).

Actually, the more I think of it, I don't remember too many people here who take steroids for relapses, that use an oral form exclusively.

[Xenova]

I think doctors in the US are more willing to give IV rather than pills when it's not cost preventative. I've read that high doses of prednisone is often given in other countries and is the norm.

Ruthie, you should talk about doing pulse IV steroids every 3-4 months for 3 days. This seems to becoming the standard in some circles. Monthly IV Solumedrol can have side effects bad for your body like Addison's, glaucomia, weight gain, lower immune response, etc. I'm not saying pulsing isn't bad.

Your dr. might have more insight and experience. Pulsing this way (if it works) could help you from missing work so much. But if you stick with one day per month, hopefully your body will adjust. My reactions to Solumedrol have lessened over time.

[CureOrBust]

I think doctors in the US are more willing to give IV rather than pills when it's not cost preventative. I've read that high doses of prednisone is often given in other countries and is the norm

My use of prednisone wasnt by my neurologist. Its a carry-over from when I was previously diagnosed with another AI. My neurologist said, when he prescribed Rebif, that we would be using IV steroids when I had a relapse. However, I think he dropped the ball on that one as he did nothing about explaining how I get around to getting it.

[mamahawk]

Doctors here (US) where I am are very pro-IV solumedrol.

I took a 5 day course when first diagnosed and made a decision to never, ever do that again. I felt poisoned, I broke out everywhere - tiny white pustules everywhere - even inside the folds of my ears!
But most of all - it didn't make me feel any better and I continued to acquire symptoms at a rapid rate.

I saw no upside to it, but it was even suggested to me to do it again recently....even though I have no symptoms!

[trrish]

I first did it was 6 years ago, for 5 days, and swore I'd never do them again either.I think maybe I did, though.

In any case the three day version feels less harsh, so far. Had a rough first night but have kept inside and quite for the next couple of days and felt better. It remains to be seen how much of the flareup is helped.

I skipped my 9th Tysabri infustion because of the trouble and did the 'roids instead. There are also testing for neutralizing antibodies. Then I'll decide about whether to go bac on Tysabri.

Trish

[Quest56]

I am just completing my 7th month of monthly IV methylprednisolone to slow MS progression. The IV is 1gm of methylprednisolone in 60mg of solution. It takes about 1hr to infuse. This protocol was recommended by my Neurologist.

I am hoping to switch to another protocol soon, perhaps low dose naltrexone, as I am very weary of the long-term side-effects of steroid use.

About your question, every month so far as been different. My stamina has improved somewhat, and fatigue has been less devastating overall, although it is still one of my most troubling symptoms (and the reason why I started this protocol). I have osteopenia, so am taking regular calcium supplements and weekly doses of actonel to improve absorption. But, it is hard to quantify the benefit.

The most disruptive side-effect is several days of near mania I experience after each infusion. Little sleep, etc.

I am no longer working. I don't know how I would compensate for this if I were.

--Tracy