How long and how much?

[kenmo99]

This is probably one of those totally subjective questions with answers varying wildly, but I am going to pose it anyway. I had my first IVSM treatment 9 days ago and I was trying to get a handle on how long it generally takes folks before they start to see relief after a treatment. So far, I have seen some improvement. I have plenty of patience, but I was just trying to get an idea. Also, how much improvement do you normally see?

[CasinoKathy]

Hi kenmo, when I was on IVSM I had improvement immediately! I know, it's hard to believe but it's true!

I started with a 3 day course, and then had 1 day a month for the next 11 months. The nurse came to my house to do this- very nice for me!

I had no bad side effects- just the metal taste in the mouth for a day and later that same day my face was flushed for a while.

Anyway, after the second infusion I felt comfortable walking around in my house doing things while the steroids were dripping in. I could actually feel my weak leg and foot getting stronger- lifting higher and my walking was faster too. I'm thinking "this is great", bring on the drugs if this is what it takes to function better!!

Well, my neuro wanted to take me off after 6 months because it's not a long term treatment, which I knew when I started them. But they made me feel so good for about the first 3 days each month, that I didn't want to stop!

So I begged him for another 6 months and he agreed. We kept up with blood tests, and at the beginning he put me on bone strengthening pills and also had a bone density test done.

The last 3 or 4 months I didn't really get that improvement anymore and it was time to get off of them.

I hope you have the great improvement too, I literally lived for those few days each month!! Good luck to you!!CasinoKathy

[Toomnyhats]

I'm an oddball ...

I had an IVSM right after my dx, even before deciding which DMD to take.

Afterward doc asked me how I felt, I told him "no different, can't feel it did a thing for me. The only reason I did this is b/c you said to & I trust you."

When I began treatment, nurse warned me of side effects but ... I slept better than ever, lost my appetite & even a couple of lbs!

[0485c10]

My first 2 steroids improved within a day, then about a month later it got worse again as if I hadn't used steroids. The first time the doc gave me another dose of the taper and this time it improved to my new baseline and stayed improved- not like it was originally, just better than it was before I did steroids.

The second time it did that too, but this time I was afraid to tell my doc because he had wanted me to do IV steroids & I refused saying I would only do oral steroids. It improved right away again, then worsened about a month later. This time I didn't tell him because I had refused IV and said oral instead. Unfortunately that was when my DL came up for renewal & the DMV would not renew it w/o a doc signature because I was so visibly unsteady. So then I had to see the doc to get his signature and I told him oral got worse, just like the IV did, but this time I'm waiting it out.

It improved to my new baseline in about 3-6 months,not like it was before I had the relapse, but better than before I did steroids.

Next time it improved to my new baseline & stayed improved within a day. IV again & this time I was on an MS med, betaseron which I had not been before. I think the MS med helped.

Next time it took about a month before I saw improvement, IV this time,but once it improved it stayed improved to my new baseline. It scared me that it took so long though. It didn't return to what it was like before the relapse, but better than it was during the worst of the relapse.

The thing about steroids they work differently for everyone and differently each time a single individual uses them

So your gonna need that patience, go easy on yourself while your body is healing the demyelination. Eat healthy, avoid stress& overexertion and get as much rest as your body needs.

The process of a relapse...the demyelination causes inflammation that impinges on the nerve and cause the symptoms of the relapse. The steroids reduce the inflammation and lessen the time this inflammation impinges on the nerve, then the body begins to heal the damage any where from 1-99%.

At 0% its SP, and it never returns totally 100%, the tissue where the demyelination happened is always weaker than the original tissue was--- noticed most in heat, stress, overexertion or virus otherwise the person might not even know there is a difference.

So have patience & see what your body gives you. The steroids, just reduce inflammation.

[cosake]

I had 3 days IVSM before official diagnosis and any DMDs for optic neuritis. I did not notice much improvement after about 4 or 5 days, then neuro put me on prednisone taper. 24 hours later, I started to improve very quickly. Don't know if the IVSM just took that long to really kick in or if the prednisone really had anything to do with it.

Only side effect was not sleeping. Had not much appetite at all and almost no bad taste. Took some sleep pills and did very well through IVSM and prednisone.

[CrazyCatLady]

My IVSM seemed to start working the day after I started it. However it did not make all of my symptoms go away but I was able to walk a little better although not in a straight line. It took maybe 2 months to walk straight but even now 4 months later I still wobble and have issues.

Just be positive.