Just to clarify . . . I did not mean to suggest that one of the DMD’s might not be the best option currently out there for many of us . . .

The CRABs are meant to reduce the number of relapses by approximately 30% on average . . . but the threat to MY health is not the number of relapses I have. My relapses are few and far between, but when I but when I do have them, they are severe.

There weren’t any DMD’s back when I was dx in 1991, and by the time I reconsidered my decision in 2003, my docs were of the impression that they wouldn’t help me (even though I am still RRMS). Almost all of my lesion damage over this 17 yr period has been in my spine, which can be a more serious threat. However, the specialists at the research clinic said that based on my history of attacks, it was their experience that the CRABs were not likely to change the course of the disease for me. (I am also terribly sensitive to most any med, so that may have factored into their recommendation.). The effect of these drugs on ‘disease progression’ is minimal too, so I don’t (personally) see the point in trying them at this point.

Many of the people on these forums are fairly new to this disease (less then 10 yrs), and the push now-a-days is to get on drugs IMMEDIATELY. I went the first 12 yrs (to 25 yrs, depending on when you start counting) without much fanfare (2 bad attacks) and I really don’t think I could have hoped for a much better outcome. Instead I changed my diet, reduced stress, immediately treated infection/fevers, (added LDN into the mix 3 yrs ago) and generally looked after my health much better then I had.

Having a long history to look back on now, I feel I've done reasonably well with the approach I chose. It is very hard to tell if any drug is working for us as individuals, but I believe that choosing to not use them has not adversely affected MY outcome.

I think PwMS, especially those with mostly brain lesions, should probably try the various DMD’s in an effort to hopefully influence the number of attacks they have.

Steroids are used to hasten the recovery from an attack, but they do not improve the degree of recovery, and they do not prevent the next attack. I understand why some people might want to use steroids to potentially hasten the recovery, but I just do not think the side-effects outweigh the benefits, particularly for those of us with mostly spinal lesions (no scientific or anecdotal evidence that they help for us). The side effects include:

Short term use:
- allergic reaction
- insomnia
- psychiatric disturbance
- stomach upset
- fluid retention
- increased appetite
- acne
- bone damage/avascular necrosis (although rare, it can occur even after a single dose of steroids)

Long-term use:
- weight gain
- high blood pressure
- cataracts
- hardening of the arteries
- diabetes
- life threatening infections
- osteoporosis, or other bone damage

They lose their effectiveness after a while too, and I've opted to reserve them for something severe, like breathing difficulties.

Cherie