haven't had steriods yet. My neuro's office only does it if there is an eye or physical complication with a flare. They seldom do it for "sensory only" flares, which is the majority of mine.

They will do it if the leison shows up active on an MRI. My main problem is by the time I "shot the tube", my new leisons have been inactive. Nothing like hearing that a leison is new but old already.

I'm PPMS, steroids never offered to me, don't help.

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

I have no problem answering your questions. In fact, if you go to the Community Feedback Forum, you can read my Bio since I am a moderator (but not in this forum.) I post here as a member of the forum, not as a moderator!

IVSM = IV SoluMedrol = IV methylprednisolone.

I was dx'd in 2001 after an acute exacerbation that left me paralyzed and numb from the waist down for 3 weeks. About 2 months later I had another exacerbation that clinched my dx. No previous hx. I was 48 and had gone back to college full time. I am now 55. I have been on Betaseron, Beta + Methotrexate, Tysabri, and Copaxone. I am currently in a clinical trial for Tovaxin. So far, nothing has slowed down the rate of exacerbations until the last two years. I have gone from 4+ to 2 per year. I have not progressed to SPMS, but right on the verge. Since I have been in this clinical trial, I have no been privvy to my MRIs and blood work, nor do I know if I am receiving placebo or real drug, it's a double blind trial.

My exacerbations leave me totally non-functional. As my neuro puts it, I am either 100% or zero. I work full time and so not being able to function is not an option. Waiting out the exacerbation is not an option for me. I tried that once, and it only got worse so my theory is get started on IVSM and stop the inflammation as soon as possible.

I have annual bone density scans, and they have been great. No signs of bone deterioriation whatsoever.

I am not a candidate for IViG to treat exacerbations due to my long list of allergies.

Each of us is different and we all react differently to meds...we all choose our own method of treatment. It's a personal choice. I respect everyone for their choice...

Comment on Lady's post....not everyone has the same reactions to steroids...I for one have almost the exact opposite reactions as most people do...and they do help me recover quickly from the exacerbation. That's why I choose to go that route. As I already stated...each of us is different...it's a personal choice. I respect everyone's choice.

I don't take steroids for exacerbations. Actually, I don't do much of anything other than take additional caffeine pills and excedrin.

I had the steroid IV treatment once. In 1988. As part of the Optic Neuritis Treatment Trials. Not for MS.

Tom

You are right, Cheryl . . . I should have said "potential" side-effects. Some people don't have much problem at all with them . . . although most people attest to having at least some amount of short-term side-effects.

Unfortunately, none of us could know the long-term side-effects until the "long term". I have known far too many people who have suffered devastating consequences from the use of them though.

Every option available is a "choice" . . . but I was just trying to answer the thread question of "why" I do NOT use steroids with flares. I retired at yr 15 (or 28, depending on how you count it) with this disease, and I didn't have MANY flares that kept me out of the workforce for any length of time. I understand why people would want to get back to work quickly though, especially if this is their only way to support themselves.

Cherie

I did for one and had a "rebound" effect-my flare got worse after the steroids. I'm waiting this one out...

I feel so blessed that it worked out this way for me to have the l.b. and lose the weight. Now that I know I have ms, I just feel better dealing with everything without the additional weight. At least, knowing that if anyone ever has to help move me around, it won't be such a burden on them. God works his will at appropriate times. My insurance didn't cover the surgery, but I had the exact same amount that it was going to cost as a medical reimbursement from a car accident injury. It just seemed like the thing to do, and as it turned out, it was.

I haven't been doing well working out, with the fatigue and all. But this summer I will have more time to devote to trying to get more exercise. Thank you for your encouraging words. It makes me feel not so alone.

Took steroids 3x - the first time helped - the other two did not and caused long term side effects - so no - I would not take them again -

What type of side effects did they cause for you? That is what I read, that they lose their efficacy after time, and are really only used for certain exacerbations, others they won't help anyhow.