Any luck with steroids for PPMS?

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Any luck with steroids for PPMS?

Postby Smilingface » Wed Mar 11, 2009 12:45 pm

I recently encountered a local well-known MS Expert (not my own neuro) who was adamant about wanting me to try IV steroids, then Tysabri if I had
a positive response to the steroids. He pretty much told me my own neuro,
another well known expert in this state was wrong to treat me with antibiotics, oral fumarate and vit D only. Has anyone with a PPMS diagnosis had any luck with IV steroids? I hate it when the experts disagree.
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby CureOrBust » Wed Mar 11, 2009 4:49 pm

This thread has links to some interesting articles on the success of pulsed steroids" in PPMS.
http://www.thisisms.com/ftopict-5965-pulsed.html
Small studies, but encouraging reduction in EDSS over long term.
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Postby marcstck » Fri Mar 13, 2009 4:13 pm

The only treatment that has put a dent in my PPMS was a 10 day course of IV Solu-Medrol. It really knocked my symptoms back, albeit temporarily (for about four months).

The downside of this was that as a result of the massive dose of steroids, I developed avascular necrosis, an extremely painful condition in which the bones of the joints literally die due to lack of blood flow. I have AVN in both shoulders and both hips, and the pain can sometimes be breathtaking.

I went on Tysabri therapy after the steroid treatments, but the Tysabri did nothing for me. As a matter of fact, I felt that it made me worse...
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Postby Anecdote » Fri Mar 13, 2009 4:29 pm

Back in the eighties one of my best friend's father died at the age of 50 from complications due to massive steroid doses taken for asthma. He crumbled from one of the best violinists of his generation to a poor week man who ended up falling down stairs , braking his hip and dying from pneumonia in less than a week.

Therefore I have never taken so much as one small oral dose.

Sarah
Last edited by Anecdote on Fri Mar 13, 2009 4:36 pm, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Fri Mar 13, 2009 4:30 pm

I have AVN in both shoulders and both hips, and the pain can sometimes be breathtaking


Good lord! 8O I am really sorry to hear that, Mark. man.
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Postby marcstck » Fri Mar 13, 2009 4:35 pm

mrhodes40 wrote:
I have AVN in both shoulders and both hips, and the pain can sometimes be breathtaking


Good lord! 8O I am really sorry to hear that, Mark. man.


I've seen several orthopedist, we'll all say that if I were healthy they would recommend my immediately getting double hip replacements. Unfortunately, the MS has done such a number on me that they don't feel I could properly rehab from the surgeries.

For now, at least, I'm left with pain medication and occasional shots of cortisone...
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Postby cheerleader » Sun Mar 15, 2009 5:36 pm

Geez Marc-
Really, really sorry. That's a side effect of IV steroid use that was never even mentioned to us. The worst thing the neuro said was metallic taste and insomnia. Why it's so important to share these facts, patient to patient.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sun Mar 15, 2009 7:55 pm

MS has done such a number on me that they don't feel I could properly rehab from the surgeries.
I am really sorry. I recently went through that shattered humeral head so I had that experience too. It sucks.[/quote]
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