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A MyMSTeam Member asked a question 💭
Campbelltown, AU

My neurologist has recommended me to start on Tysbari and was wondering what people who have used this treatment thought of it.. And the side effects. I'm a little concerned as I'm a single mum and don't get time to rest as it is and was told it does make you gain weight?

June 5, 2016
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A MyMSTeam Member

Well, after 52 months of Tysabri I can't give it enough praise, before starting I was good for two relapses a year which always needed steroid therapy. A have been relapse free since starting Tysabri and that really the point isn't it. I have experienced no side affects nor any weight gain.

June 5, 2016
A MyMSTeam Member

I personally don't take it, I'm on Tecfidera (only to be able to reserve tysabri so I have something to go to). But, I have a good friend who also has MS and she has been on other treatments for years, mainly injections. she has been on ty for probably about 6 months now and loves it. She says it's the first and only treatment she has had yet that actually makes her forget she has MS. I don't know if that helps, but she is very happy with it thus far.

June 5, 2016
A MyMSTeam Member

I've been on Tysabri for almost 3 years now. I love it. The other treatments didn't help. I have secondary progression and was progressing quickly. After starting Tysabri, it slowed it way down. You just have to make sure you have the JCV blood test to make sure you are negative BEFORE you start and then I think every six months. Also, I think they do MRIs every 3 months. I can't have MRIs, so my neuro does the JCV blood test every three months to keep tabs on the JCV. If you go on Tysabri, just make sure they do the MRIs and JCV blood tests. Once you test positive, then they will probably take you off Tysabri, because of the chance of PML. (Fatal Brain Disease-NO CURE) I would recommend Tysabri, just make sure you do your homework on watch to watch for. As far as gaining weight, I haven't had an issue with that. I have heard that being a side effect of the drug. Let me know if you have any questions.

June 5, 2016
A MyMSTeam Member

Your little one sure is a cutie :)

June 5, 2016

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