Multiple Sclerosis

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Natalizumab

Natalizumab

I'm just wondering how Tysabri is going to make me feel.I've read that some people feel great except for the last week. I hope it will give me some strength and energy.

A MyMSTeam Member said:

Hello, I have been on Tysabri for 10 years now. Prior to going on Tysabri I was on Rebif. I did not have good results with Rebif, in fact I was just… read more

posted over 2 years ago

Natalizumab (Tysabri) and JC+ . Do you assume this risk?

Natalizumab (Tysabri) and JC+ . Do you assume this risk?

Hello guys,
I'm on Tysabri for 18 months..with JC index 3.5. Unfortunately we don't have here another second line treatment option.. What do you think ? How dangerous will be to take the risk to go on with tysabri ? Did anyone of you pass such difficult choice ?

A MyMSTeam Member said:

Dear Pollux,
Thank you so much for all you’ve shared with us. Looking from outside of me, leaving my terrible fear, you are perfectly right. For the… read more

posted about 1 year ago

Natalizumab

Natalizumab

I was just wondering if anyone has tried Tysabri Infusion, and how they are doing? I am thinking of trying it, but I am very scared. I almost died when I tried Copaxone. My white blood cells dropped to under 0.5 I have not taken anything for 3 years now, but my MS is now progressing. Especially my balance.

A MyMSTeam Member said:

I have been on tysabri for 6 years now and it has been a life saver for me. In my experience I've had little to nk side effects wish I would've started… read more

posted almost 3 years ago

How are your experiences with Tysabri (natalizumab) ?

How are your experiences with Tysabri (natalizumab) ?

I'm getting ready start this medicine as long my JCV test comes back in my favor (which it should like several months ago). I'm a bit nerves being that it's an infusion and the risk that come with it. I just want to know your experiences with this treatment. Thank you all in advance and be blessed!!

A MyMSTeam Member said:

Airheart - we bot had similar experiences with Copaxone, Rebif, Tysabri, JC Virus - plus the frequent monitoring.
That' all :)

posted over 2 years ago

Natalizumab

Natalizumab

I'm on Tysabri from 18 months ..but I am JC+ with high titre: 3.5 I don't have another option from switching the treatment : only Copaxone wich is very low for my ms activity . I'm afraid of PML but also afraid of my MS. My Dr told me that I have to take the PML risk because we don't have in my country another 2nd line ms drugs ..
Did anyone of you continue with Tysabri & high JC + ?

A MyMSTeam Member said:

Good morning alexa83, (I have never tried Tysabri)

posted about 1 year ago

Information on how you found natalizumab or Fingolimod

Information on how you found natalizumab or Fingolimod

My partner has been offered to try natalizumab or Fingolimod due to her last prevention medicine failing its duty. The side effects described seem severe can someone who is on or has been on one of the two or both please advise me of the medicine and how it affected them, how effective the drug is to prevent relapses and lesions and how the drug can or has affected the person taking on day to day, week to week and month to month basis.
Our intent is to find… read more

A MyMSTeam Member said:

If you mean glenya. I loved it. It kicked but for my ms. The problem was my liver didn't like it . My enzymes spiked to 500 % of normal so i had to… read more

posted over 3 years ago

PML Treatment!!! New news

PML Treatment!!! New news

Multiple Sclerosis News Today announced 4/16/19 a possible treatment for PML. This is the first treatment to show promise for those who have contracted Progressive multifocal leukoencephalopathy, a brain infection that is potentially fatal.

The National Institutes of Health reports that anywhere from one-third to two-thirds of the population carry a common bug known as the John Cunningham virus (JCV). It usually lives harmlessly in the kidneys, but in a person with a compromised immune… read more

A MyMSTeam Member said:

I can ask my MS DR, thank you !

posted about 2 months ago

NHS decline ocrevus.. why

NHS decline ocrevus.. why

Been looking so forward to ocrevus coming out in the uk now the nhs have declined it http://www.pharmatimes.com/news/nice_no_for_roc...(Phone number can only be seen by MyMSTeam users) How can you decline a medicine that is proven to work better then the others with minimal side effects and slowing of disability

A MyMSTeam Member said:

“What was a surprise in the March 28 announcement is @Ocrevus will come on the market at $65,000 a year. As crazy as this might sound, this is good news… read more

edited, originally posted over 1 year ago

Natalizumab

Natalizumab

Hello everyone,
I have made this profile to discuss my Mother's multiple sclerosis. I can't even describe how much this is effecting me. My mom is my rock and my best friend. She was diagnosed in 1992. In 2011 she started drug treatment rebif. She would have constant headaches weakness and fatigue. Her MRI showed a significant amount of lesions so her doctor changed her medication to Abagio. She wasn't having any progression, in fact, we thought she found her perfect treatment. A month ago my moms… read more

A MyMSTeam Member said:

Thank you BeverlyCundelan. :0)

posted almost 4 years ago
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