The first time I took steroids for double vision, it restored my vision within a few days. I had a big flare in January with right side weakness, extreme head to toe numbness, spasticity, and pain. I did 4 days of solu-medrol and it did absolutely nothing. It's been 5 months and I'm not better. I had to go on temporary disability, and this flare has been devestating physically, mentally, and financially. Why didn't steroids work?
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Originally posted by pyrmama2 View PostWhy didn't steroids work?
Originally posted by pyrmama2 View PostThe first time I took steroids for double vision, it restored my vision within a few days.
The mistake people make about steroids is that they think steroids affect the final outcome. They don't. So there's no reason to treat with steroids if the only hope is that they'll "work" and "make it better." The benefit to steroids is that they *can* -- but there's no guarantee -- reduce the healing *time* and shorten the duration of the symptoms. And they do that by providing that quieter environment that allows the body's own healing processes to take place. And when someone has extensive debility from a flare -- like you do -- there's great benefit in restoring (or trying to) as much function as possible as quickly as possible.
So THAT'S why your flare was treated with steroids. In your position I would have done exactly the same thing. And I have done it several times. Here's the critical point. IF not a lot of damage has been done and steroids are administered quickly, that quieter environment can allow nerves to heal quickly and fairly completely. BUT IF too much damage has already taken place before the steroids are administered, there's too much damage to overcome and the nerves can't heal.
Sometimes healing is actually fairly complete, just slow. Sometimes the amount of healing is limited because some of the damage is *already* permanent. Sometimes all of the damage is permanent and there is little to no recovery. All of that damage happened independent of the steroids, and there's nothing steroids can do because they don't heal anything on their own. And when steroids don't do something they aren't supposed to do and can't do, it can't be said that they didn't "work."
Originally posted by pyrmama2 View PostI did 4 days of solu-medrol and it did absolutely nothing. It's been 5 months and I'm not better.
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Hi pyrmama2,
For weakness you might consider working with a Physical Therapist(PT). PT and exercise are both important for regaining and improving strength and mobility. Your Neurologist can give you a referral for PT.
There are symptom management medications that can help some symptoms. There are very few symptom management medication that have been FDA approved specifically for MS, most of the medications prescribed for MS symptoms are used "off label." Muscle relaxers are used for spasticity.
Exercise and PT is helpful for MS symptoms such as fatigue, spasticity and pain. Some people have had improvement in numbness with Neurontin, but it can be hit or miss.Diagnosed 1984
“Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic
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Sorry you're feeling like this, how frustrating for you. This won't help with your current issues but if you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral. I hope you get some answers you need and end your suffering.
JenRRMS 2005, Copaxone since 2007
"I hope to be the person my dog thinks I am."
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Originally posted by Cat Mom View PostSorry you're feeling like this, how frustrating for you. This won't help with your current issues but if you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral. I hope you get some answers you need and end your suffering.
Jen
Originally posted by Cat Mom View Postif you have to do the steroids again maybe ask for 5 days of IV with an oral dose to follow, tapering you off slowly. I've only had one flare that left permanent damage (left eye is blind) and I didn't get the oral taper. It was my first flare, the one that led to the DX, so I didn't know about the oral.
Further research has shown that an oral taper also has NO effect on the outcome of a flare, and oral tapers are no longer recommended. If anything, the additional steroid ingested with a taper adds to the risk of additional steroid damage -- diabetes, bone death, osteoporosis, glaucoma -- for no benefit. Does that taper still sound like a good idea?
The practice of oral steroid tapers came from diseases like lupus and rheumatoid arthritis that sometimes show rebound flares of inflammation after sudden cessation of high dose steroids. Many years of use of high-dose steroids in MS have shown that MS doesn't have rebound flares. No rebound, no need for a taper. Doctors who don't keep up with practice recommendations might still prescribe tapers, but they're not in the patients' best interest.
I take high-dose steroids 4 times a year and I haven't done a taper in at least 10 years. My doctor wouldn't prescribe one even if I asked for it.
And certainly, long-lasting effects after a flare has nothing to do with whether a relatively small taper was done 5 months before.
So no benefit plus additional risk of harm has eliminated the outdated practice of an oral steroid taper.
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