IVIG's for PPMS

IVIG's for PPMS

Postby Jumbuck53 » Sat Mar 17, 2012 12:42 pm

Hello everyone, I was reading George's book last night and came across a section that looked promising for sufferers of PPMS.....IVIG Therapy only to find that is was not yet approved for use in Australia. So I did some research on google and found that approval had been granted in 2008 and updated in 2011.
You can imagine my excitement when I saw this so I down loaded a "Quick Reference Guide" for the use of IVIG's. Scanning the index I saw MS was on page 82 so went straight to there. Here is what the guide offers:

"http://www.nba.gov.au/ivig/pdf/criteria-qrg.pdf

Medical condition
MULTIPLE SCLEROSIS
(Condition for which IVIg has an emerging therapeutic role)
Indication for IVIg use
Short term therapy in patients with clinically definite relapsing
remitting MS in the following circumstances:
1. Pregnancy and the immediate post partum period
when other immunomodulation is contraindicated;
2. Young patients with severe relapsing remitting
disease in whom other therapies have failed;
3. Severe relapse with no response to high dose
methylprednisolone.
Level of evidence
Category 2a – Some RCTs and/or case studies
– Evidence of probable benefit – more research needed."

You can imagine my disappointment when I read the criteria for use of IVIG Therapy only to find that (once again) it is a therapy for RRMS and PPMS sufferers are left to sit on their own and contemplate their grim future. My excitement has turned to utter dismay but I suppose I'm not too surprised. It will be just one more question for the Neurologist next week.

Thanks for listening to me gripe yet again.
Peter Euston.
Jumbuck53
 
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Re: IVIG's for PPMS

Postby Pongooz » Sat Mar 17, 2012 9:43 pm

Hi Peter
If your BIL is not keen for OMS lifestyle and couldn't handle the thought of giving up meat try reading up on Dr Terry Wahl she was quite disabled and in a reclining wheelchair but changed her diet (paleo diet includes meat) and uses electronic stimulation (TENS) I think and now rides her bike to uni. I haven't read her book but you can google her and watch her on YouTube. Good Luck with your research
Pongooz
 
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Re: IVIG's for PPMS

Postby Susan Doumbos » Sat Mar 17, 2012 10:27 pm

Here's a link:

http://www.terrywahls.com/

I think her advice about eating a huge variety of vegetables, and lots of them, is excellent. I am trying to do this!

Cheers,

Sue
Cheers,

Sue

OMG December 2011 OMS January 2012 OMS Retreat March 2012
Two Very Mild Relapses since diagnosis. Copaxone May 2013 No new lesions on MRI since diagnosis
Susan Doumbos
 
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Location: Mount Martha, Victoria, Australia

Re: IVIG's for PPMS

Postby Jumbuck53 » Sat Mar 17, 2012 10:56 pm

Pongooz wrote:Hi Peter
If your BIL is not keen for OMS lifestyle and couldn't handle the thought of giving up meat try reading up on Dr Terry Wahl she was quite disabled and in a reclining wheelchair but changed her diet (paleo diet includes meat) and uses electronic stimulation (TENS) I think and now rides her bike to uni. I haven't read her book but you can google her and watch her on YouTube. Good Luck with your research


Hello and thank you for the above information. I am certainly more encouraged since reading her story and listening to her on TED. I just hope that the information Dr Wahls has offered for SPMS is equally effective for PPMS. I have put my name down to be notified as soon as her book is published.
I am so glad that I joined this forum and met so many wonderful, caring people.

Keep smiling and stay well.
Peter Euston.
Jumbuck53
 
Posts: 13
Joined: Tue Mar 13, 2012 8:01 pm


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