Starting Tysabri - scared :(

Everyday living
21

Hello to all you lovely folk.

I started Tysabra in December and just found out in February that I am JC positive 0.8 is the level. I asked a lot of questions once I found out I was positive and was reassured that they will keep a close eye on things with blood tests and mri and if things really change will swap to another medication. I have had ms for 12 years and never thought of dmd for the first 8 but when I was diagnosed with breast cancer 5 years ago(which I got through ok) I decided that now I was on tamoxifen to prevent the cancer from returning I thought that I should be on a dmd to help stall any further ms relapses. I started copaxone as it was ok to take along with tamoxifen and things were good for a few years but since february 2021 I have noticed a real dip in ms and since november 2021 my mri showed that ms was very active and my neuro suggested Tysabra. So far,so good and I really feel for me thebenefits outweigh the risks.

Much love and best wishes,

Mary

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I wasn’t on Tysabri very long, 8 infusions. JCV was 3.4x when I started and was 4.2x if I remember right, at the end. The 4. something was apparently the highest seen at my hospital. Yay, record for me I suppose. Neurologist wasn’t happy for me to continue Tysabri though so took me of it. I’d have happily accepted the risks and stayed on it but utlimately that wasn’t my decision.

Been several years since I was taken off it and I do miss it. Good example of the medical staff keeping an eye on the risk factors and halting Tysabri if risk increases to an unacceptable level.

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I hope you continue to do well on it, Mary. Your post appeared at the bottom of a very, very old thread, and when I scrolled up it I was startled to see a post from me when I had been on Tysabri for 8 months. Well, I’ve now been on it 10 years, and no relapses yet! I hope it does the same for you.

Alison

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Thank you so much,hope you are well as you can be with this ms.

Much love

Mary

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