Anyone do a one day round of IVSM or Solumedrol Smoothie on a regular time schedule?

I'm still interested in Tysabri, but because of logistics, it probably won't happen for at least 6 months or so (local oncology hospital has ridiculously restrictive hours - my medical practice is finally touch certified but in the process of retrofitting a building for their own Ty infusion center).

Going to Copaxone from Rebif has increased my MTBF (that's "mean time between failure") from three months to 6 months...but I want more than that.

My neuro thinks that in the short term, a preventative round of solumdrol every three months might fend off the exacerbations. The idea of taking steroids so often doesn't sound great, but then again...if it worked it would only be 4 grams of solumdrol in one year, as opposed to 3 grams every 6 months which equals 6 grams in one year.

In one year (assuming it worked) I'd actually be consuming 2 grams less solumedrol.

Key words ..."Assumming it worked".

Has it worked for anyone else??

Yup - worked for me for a couple of years. That is until my bones opted to thin themselves. I did 3 days every 4 months. So, that was 9 grams per year I guess. I did feel that it helped keep me stable. There is also a study on PubMed about pulse IVSM therapy having a disease modifying effect.

Wow...Thanks Holly. This was exactly what I wanted to see.

If my hip bones get thinner, will my pants fit better??

Just out of curiosity, what did you do for your thinning bones? Can you take one of those "bone boosting" drugs they give to women with osteoporosis?

yes i was doing rebif and once a month 1 gram IVSM for quite a while.. it worked ok and it was nice to feel normal and have energy for 1 week out of the month.. but my MS was not slowing down as much as i wanted it to and my active lesions refused to calm down at all.. so i decided to try TY to see if that would work better for my MS..

I never thought of that, but no my pants don't fit better.

Since this is osteopenia, we caught it early and I can get away with extra calcium and Vitamin D. Anyone on pulse steroids should get annual bone scans, though. Keep that in mind so that you can catch anything like this early.

Good luck - I hope you have positive results.

From a discussion I had with my neuro this is a common type practice for certain type cases.

I was prescribed and did this for a while, until I pleaded for relief! Steroids and this bird aren't really friends in the temperament department!

Try it and I hope it works for you!

I'm glad to hear Copax has had that much of an impact on you, I just started taking it...

Hi Victorya

I've done that - pulse steroids. It was when I was on Betaseron and then for the year plus when I was on no therapy. So far, the amount of steroids I've had has not affected my bones (I've had a bone density scan every year).

The pulse steroids did lessen the severity of the exacerbations but it did not slow the rate. I still had exacerbations but they were not as bad. For me that was worth the increased amount of steroids my body was being subjected to as I was still able to function, somewhat limited, but not bedridden as I had been prior.

If you plan to go on Tysabri, you will not be able to do pulse steroids. There is a wash out period for steroids before you can start on Tysabri and if you have been doing pulse steroids, then I do believe the wash out period is longer. You will have to check with your neurologist for his opinion on what he considers the appropriate wash out period.

Each person is different with the disease and I know how you feel having been there with so many exacerbations with no relief on the horizon. It's so damn frustrating. I got so tired of IVSM every 3 months ...

I thought about this a little more....you know one way to help combat your effects from the IVs is to pump some iron! Doesn't have to be a lot, and if you can't hold on to some dumbbells and can't use a gym you can get those stretch resistance bands.