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Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

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@bellabell 

Last reply

bellabell

Treatment choice.

Hi. I'm new to shift ms and I'm in need of advice regarding treatment. When I was diagnosed I was put in tecfadera, this gave me terrible side effects and I was moved to aubagio. Which has failed miserably. I have had 3 relapses in 12 months and 5 in 2 years. So I got a letter saying that I could be moved to Gilenya, tysabri or lemantra. But I have psoriasis and the Neuro was looking for one that would treat both. He asked my dermatologist and that's it possible (its not) and I heard him say I'm probably going to give her Gilenya then. My question is do I have a say? I'm not keen on his choice as I'm worried about the side effect of macular oedema. I have virtually lost the sight in 1 eye due to optic neuritis and I can not lose my license as I live on a farm miles from anywhere. Can I ask for a different one? The ms nurse sent me information on the 3 treatments that were in the letter and I'm leaning towards tysabri. But like I say I don't know if i have a choice. Any help would be great. I feel very confused & I'm worried about progession and I need these relapses to stop! Thank you.
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@wjgregg
@wjgregg
 

Hi there. Yes, you do have a choice. The NHS cannot force you to have a treatment that you are not comfortable with. I myself have been taking Tysabri for seven months and, touch wood, it is working fine for me. There are side effects, such as fatigue and joint pain but I wonder whether they come with multiple sclerosis in any event. You do what is best for you. Remember, you are the patient and it's your life. It's your choice, not the doctor's. Good much, and best wishes. Jon

@Wilf
@Wilf
 

I think it is up to you. I was given the choices and had to go away and choose one that would suit me. They can recommend what they think would be best but in the end it is what is best for you. At the beginning they gave me a choice of injectables and I chose the one with the least injections. When that didn't work they gave me other choices and I chose the one I thought I could cope with.