Immune Disorders Forum - Susacs Syndrome

Conditions and Diseases > Immune Disorders Forum > Susacs Syndrome

Q: Susacs Syndrome

asked by: Aussiemum on April 6th, 2009

New User

Hello,
My daughter has just been diagnosed with Susacs Syndrome now having the full triad of classic SS symptoms being acute encephalopathy for 5 1/2 months, tinnitus and then moderate hearing loss and now they checked her eyes and see retinal branch artery occlusion. She has been considered to have MS and began Rebif up until last week. Previous treatments have been 4 pulses of Methyl Prednisone. One of IVIG and 6 plasma exchanges. These last two were given in December. The MP over the entire period the last being mid March. The doctors want to begin her on Cellcept and I would like your opinion on the efficacy on this drug with this condition.

Many thanks,
Aussiemum

Replies(2)

MandMs

replied on April 8th, 2009

Extremely eHealthy

High-dose corticosteroid therapy is the mainstay in treatment of this syndrome.
Usually, additional therapies are necessary along with corticosteroids, such as Cellcept, intravenous immunoglobulin, and, cyclophosphamide.
There is a new therapy with a drug known as Rituximab.

melissam1088

replied on August 29th, 2009

New User

I was diagnosed with Susac's 2 years ago and had the triad susacs symptoms. I was given high doses of steroid treatment along with IVIG monthly for 6 months last year I was also given 2 seperate iV pulses of Rituximab and has taken Cellcept since Jan 2008. I have had great luck with everything that I was given and now feel that I am in remission. Hope all turns out well with your daughter. Question though, how old is your daughter? Did they tell you why they she has Susacs?

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