This is a great thread. This should garner some good experiencial information. My doctor said basically what Uppitycats said. Don't use them unless you are really uncomfortable or if your activities of daily living are affected. I have only used them once. I am fairly newly diagnosed. I had two big flares that were to be my diagnostic flares. No one knew that it was MS so no steroids. Last spring I had a big flare and called my doc. My doc is actually an hour and a half away so we do a lot by phone and e-mail. She ordered the solumedrol for five days. I had the infusions at home. My side effects were sleeplessness, horrendous heart burn, and sort of general anxiety. I did not think the steroids did that much for me. My doc thinks they did shorten the discomfort.
I felt better after about six weeks. It took another 8 weeks before I could tell what residual symptoms I would be stuck with. It was a miserable experience. I was in agony with spasticity and had to add pain relievers to the mix. I also did physical therapy to get me back on track. I missed a couple weeks of work and returned with a pronounced limp that took some time to go away. I had botox to relieve some very specific spasticity in my left leg that was causing the limp and toeing in.
That is my only experience with steroids. My doc only orders the IV type. She feels it is for comfort only. She believes that whatever disability that the flare is going to cause is not controlled or affected by the steroids. She is perfectly ok with me NOT doing steroids. I had a minor flare in November lasting about 4 weeks for which I had no treatment.
If and when I flare like that big one last spring, I would ask for the steroids again. I only want them if I am in pain, having visions problems or if my activities of daily living are a problem. I have not been "normal" since well before diagnosis and agree with Uppitycats, normal is definitely redefined with MS. I am definitely in remitting right now but have constant symptoms that are my new normal.
Love and prayers,
Yes, Kiera, you've identified what for me was probably the most frustrating part of this disease: just when I thought I "had it figured out", another flare would come along with different symptoms, or different intensities of symptoms, and I'd have to factor those in to what I'd considered "normal", all over again.
Somebody was grousing at me (not here, but in "real life") that they had suffered a disability, and now they were "like me". I assured them that..while they did have a disability (they'd fallen off a roof, dislocated and damaged their shoulder)...we were different in that
they, once they completed healing and physical therapy, would KNOW...from day to day, month to month, year to year...what their disability was going to be. And that, over time, while their shoulder may weaken some, it was ONLY going to be their shoulder that was impaired, and they'd figure out what they could do and couldn't do, and that wouldn't change much.
Whereas for ME, I really didn't know, day to day, what I'd be able to do..or not do. And wouldn't know, in the midst of a flare, what it would be like once the flare (or exacerbation) cleared up. Would I return to what it was like before the flare? Would I have increased disability? would other stuff come up? etc....
So yes indeed, it's forever moving "normal"...forever having to re-focus and relearn and move in a different direction. Frustrating for sure.