Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 06-25-2009, 09:58 AM #20
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Chris, I haven't got any information on steroids administered to people who are on Tysabri who develop PML.

I know there are people here who are or have been on Tysabri and have been determined to be in relapse who received a course of steroids.

As I understand it, as long as MRI shows lesions and inflammation consistent with relapse, a course of steroids may be administered. If ANY lesions are inconsistent with MS lesions (MS lesions are perpendicular, PML lesions may be blotchy, in unusual areas of the brain away from previous lesions, or may be at odd angles from normal MS lesions) steroids should NOT be administered.

I do know that IF a person has PML, is treated with plasmapheresis, and shows IRIS, steroids are part of the treatment for IRIS.

This was one of the problems my neuro talked about, that there are a lot of neuros and radiologists who hadn't ever seen PML because it was almost always seen in AIDS patients who were treated with strong immunosuppressants, but all AIDS patients who are on drugs don't develop PML. ( I went right to the head of my radiology department because he reads my MRIs and asked him straight out and got a very informative lesson in PML and MRIs.)

What we need is a test to check for JC virus, an easy one. Right now it appears that it's a combo of tests checking urine, blood and CSF. 80-85% of the population carries JCV in their kidneys. It's when it's activated into the blood and CSF that it becomes a problem, and in many people it never makes it to the brain.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline  
"Thanks for this!" says:
ewizabeth (06-25-2009), Grammie 2 3 (06-25-2009), Natalie8 (06-25-2009), SallyC (06-26-2009)
 


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
LDN Information & Check-in 2 SallyC Multiple Sclerosis 827 07-07-2017 09:46 PM
Tysabri Information & Check In Curious Multiple Sclerosis 988 04-16-2009 05:09 PM
LDN Information & Check In SallyC Multiple Sclerosis 844 01-15-2009 11:40 AM
Part 2...Medicare Part D/Prescription Coverage Stitcher Parkinson's Disease 1 12-17-2006 12:50 AM


All times are GMT -5. The time now is 04:14 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.