Has anyone not had positive results with IV Steriods during an MS Exacerbation and investigated other treatment options? If you mind sharing with me what options were successful I would appreciate it. My family member feels helpless and I am not at the point of considering Plama exchange and I am nervous about IVIG. I have heard of a drug Acthar can anyone share with me feedback on their personal experience and if it were able to help you or a loved one?
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I'm allergic to steroids, so I'm probably the last one who should be commenting. But I've read numerous accounts over the years of folks who thought that the IV steroids weren't working for them, but a week or two down the road they realized they had improved.
So I don't think it's always an immediate thing, as far as improvement.
They say that the course of the disease is not affected, for better or for worse, if we get steroids, they just usually make you feel better sooner.
But as I said, I've read reports of those that took longer to get better, and then I've read reports of those whose treatment took time to kick in, and I've read reports of those who felt worse, but eventually came out of it.
Here's a couple older threads I found that apply to steroids and feeling better (or not):
http://www.msworld.org/forum/showthr...roids+-working
http://www.msworld.org/forum/showthr...roids+-working
http://www.msworld.org/forum/showthr...roids+-working -
It took me a good month before my symptoms started to go away after the Steroid IV. How long has it been since the IV?Comment
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I've actually done IVIG. I had initially good results (less so with multiple treatments) and very few side effects. The biggest issue is that insurance tends to fight it.Comment
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Hi Jennifer:
As you've found, there are only two other options besides steroids: Acthar gel and plasmapheresis. The last time I checked the medical literature, the research showed that IVIG does not help acute relapses of MS. You'll have to check the literature yourself to see if anything new on the subject has been published in the last year or two that's compelling enough to counter the previous research.
There are several threads here about Acthar, which you can access by using the Search function.
Acthar is ACTH, a hormone that stimulates the body to produce its own corticosteroids. Sometimes it's effective when a round of steroids hasn't been. But it might also be that another round of steroids might have been just as effective. And since Acthar is usually administered over the course of two to three weeks, it might seem like the Acthar was responsible for improvements in the person's condition when that's the amount of time it takes for some people's bodies to start healing on their own anyway.
As with synthetic hormones, Acthar might be helpful, it might not. Since medications work differently in everyone, other people's personal experiences can't be used to predict what will happen for anyone else.
The other thing to bear in mind is that steroids (internally generated or synthetic) don't heal anything. They only set up the environment in which healing can take place. The body has to heal on its own, and that sometimes takes awhile.
Plasmapheresis might be helpful, it might not.
You didn't give us any specifics about your loved one's situation, so we can't say much more about what you might expect. Steroids, Acthar and plasmapheresis have all been shown to be beneficial. They just don't work for everyone, or even in the same person all the time. The only way to know if one of those options will be helpful is to try it. Your loved one's doctors will be the best sources to talk to about your expectations of any treatment and how appropriate the optional treatments might be.
Please post again if you'd like to give us more information or ask more questions.Comment
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This is probably not what you want to hear but it took me about 6-8 weeks to finally feel better after a course of steroids. I was taking lots of symptom management meds during that time, but have now dropped most of them as I feel loads better.
Is this your first go-round with the roids or just a first-time issue?Newbie
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steriods, yes or no?
Steriods worked for me doring my first flare,but hasen't worked for future flares.
They don't work for everyone, like everything about ms, just be hopefull, mabe it will work for you.Comment
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They usually work for me, basically instantly. Hobble in, walk out.
On the other hand, blood pressure goes whooshing through the roof.Comment
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