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A MyMSTeam Member asked a question 💭
Camrose, AB

I was diagnosed in Aug 2017 and started Rebid in Oct 2017. I recently had another mri followed by an l.p.. I have active inflammation and my new Neuro suggested I start mavenclad as rebid isn't working. Anyone have personal xperience with this very new drug? Thanks.

June 3, 2018
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A MyMSTeam Member

@A MyMSTeam Member There is a one year study (dependent upon when the last patient joined the study) at the Ottawa General Hospital looking into the effectiveness of stem cell transplant without the chemo to kill the immune system prior to transplant. I just missed out on being a participant at the last step because my MRI didn't light up like a Christmas tree showing active inflammation (My MRIs never do - I think the same lesion areas just get picked on all the time and it's hidden beneath existing scars - just my theory until there's a better explanation.)

The goal is to try and do the least invasive treatment possible for the best results.

I'm anxiously waiting to hear anything on the results of this one.

June 4, 2018
A MyMSTeam Member

I didn't have much of a pros cons list. I'm transitioning to Secondary Progressive, so this is my only option to hit a pause button hoping for at least 4 years of remission to see if any of the stem cell studies being done by the MS Clinic I'm with get through the approval phase and actual start treating patients.

My neuro said that this is the best option for me at the stage of the disease I'm in if I want to still be eligible for the treatments coming down the pipeline.

I'm angry that once that Progressive label gets slapped on a chart it's like you don't matter as much to researchers and that you're kinda of tossed aside with "managing symptoms" being the only option.

I don't have much to say about the medication at this point. I just took the first dose this morning.

This is my Hail Mary it seems, but I can try and answer any questions,

June 4, 2018
A MyMSTeam Member

I've heard of Mavenclad

I think there was one or two people on it on this site... It sounds promising

June 3, 2018 (edited)
A MyMSTeam Member

Yes me too! Sounds promising for sure.

June 4, 2018
A MyMSTeam Member

Im Hopeful this drug will benefit all who tries it. Send in prayers this will put you and I into remission. I haven't been labeled with progressive by Neuro but I question if I am and she doesn't want to put that label on me yet🤔 where is the stem cell being done? Canada?

June 4, 2018

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