Neuro Visit and Steroids

[ME610]

I was diagnosed with MS in Jan 2008.... I have seen my neuro about every 6 months since. I am on Copaxone and haven't had a "real" relapse since... or maybe I have. Of course I am tired all the time, have trouble walking long distances.. BLA BLA BLA.

At my most recent neuro visit,(3/31) I was complaining of my left arm being numb.... on and off for weeks. LONG story, he gave me oral steroids. They are working. I feel the best I have felt in YEARS!! I have realized that I have forgotten what it is like to feel normal.

My question is how long can I expect oral steroids to keep me feeling like this? What do I do to keep feeling like this?Can I just always be on a low dose of steroids? I can't believe how much energy I have and how GREAT I feel. Walking the 5K MS Walk on Sunday... hoping I can actually walk the whole thing this year (haven't the last two years).

While I try to take as little meds as I can, I could be easily talked into steroids if it means I feel normal and have energy like this.

(off topic... sort of I teach school and ended up revealing to a student last week of my diagnosis... she looked at me and said.. oh that is why you walk like that).... NOT this week!!

[Redwings]

Hi ME610:
In theory, yes you can stay on a low dose of steroids. But it isn't how MS is usually treated, and it isn't the best choice because steroids cause their own long-term damage, including diabetes, osteoporosis, bone death, glaucoma and cataracts. The goal in treating autoimmune and inflammatory conditions is to try to use other medications to keep people off of steroids. Sometimes it isn't possible.

In MS, some studies show that there can be a short-term advantage in giving high-dose steroids intermittently, a practice known as pulsed steroids. (Even though you may see it written as pulse steroids, the correct term -- the adjective -- is pulsed, with a d). The most common way is to give 1000 mg IV one day per month for 6 months or a year, but there are variations on this, including 1000 or 1250 mg oral prednisone 1 day per month, 500 mg IV or oral one day per month, and 3 days of IV every 3 months (depending on the person). Even though the pulsed steroids clear out of the body in a few days, there is still the risk of cumulative damage. So the use of pulsed steroids is really a trade-off, sort of "spreading the damage around."

As an example, I have NMO, not MS. I spent years on pulsed IV steroids, and I went back on low-dose oral prednisone last year because I've run out of immunosuppressants to take. I'm taking prednisone not to feel well, but to prevent debilitating relatpses. But as I'm doing it, I'm fully aware -- and accepting -- that I'm developing osteoporosis and cataracts as a trade-off.

The other thing to be aware of is that steroids seem to lose their "punch" the longer they're used.

So you can be on low-dose steroids long-term, but the effects can't be expected to last more than a couple of years on average with MS, and you'll be trading off feeling better now for a variety of other problems later. And those later problems can be really awful. So if the only benefit you're getting now from steroids is an energy boost, there are other, less-risky ways to try for the same thing. The decision is yours to make.

[0485c10]

Perhaps this means you should be looking at a maintenance med that is stronger than copaxone?

[Thinkimjob]

I've always wondered which sadistic sods came up with a 5km Walk as a fundraiser for MS.
Good God! Why not a MS Marathon? (Yes, I know, 5km is a marathon for some - I feel that way about 500m.) Or a MS Tightrope Walking Challenge? Or... I could go on.
As for the 'roids, they do work, but I don't think they do much to stop the underlying damage caused by a flare.
I love/hate them. You can't take them too much, because they really aren't good for your body. (Yes, I know, it's not like your body is in such great shape anyway, with MS. I haven't decided whether I really care about future damage. Hard to worry too much about it when the here and now is bad enough.)
Pleased you're feeling better.

[leahchris]

Great now, very bad later

Hi.

I did the same thing. Took high-dose oral steroids for long periods of time in my life. Felt great every time.

BUT, now I have steroid-induced Type II diabetes, and it has taken me 10 years to lose 25 pounds. I have more to lose and the extra weight make the diabetes worse, which make me feel worse, etc. I have come to view steroids as a lost resort, even though they would help for a while.

Try everything else first! The consequences of steroid use make you feel worse in the long run! But, I am glad you are feeling better. We all need a break form this disease once in a while.

[ME610]

Thanks

Thanks for the replies... even though it is not the answer that I wanted. Would love to continue to feel this great, but everyone I speak to (without MS) has said steroids are not for long term use. I guess I did know that... but was hoping that it would be different for "us".

I am waiting to have a script filled for Amprya... hoping that will keep me feeling this well.

Thanks for your opinions and support.

[Thinkimjob]

No, alas. Pretty much everything else is, but not that.
The other thing I read (no link) was that very high-dose steroids can help greatly with spinal cord injuries, but only if they are given within the first 8 hours.
Paraplegia instead of quadriplegia in some cases. No complete fix, though.
Apparently that is standard treatment in the US, but not in Australia.
Maybe it would work that way with a MS flare, but they tend to sneak up on you, these flares - by the time you realize how bad it is, it would already be too late.