Last reply 12 months ago

Has anyone tried this drug . My dictir recommending me this treatment as it be available here in Ireland April. I have been unlucky with dmd as they made me worse been on them. Tried capozone, anonex and gilyena .

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1 year ago

Hi @seajack and welcome.

Zinbryta has literally just been approved for use by the NHS in England and Wales, but there are some comments here by the team at Barts :-

1 year ago

Thanks for the link stumbler! Interesting. X

I am on Zinbryta since April 2017. First injections, some really ugly rashes appeared. Now seems to be OK as long as my liver tests remain OK, I will continue this drug. I tried 3 other drugs before including Tecfidera, Copaxone, but had to stop because of side effects. The blood testing and injection ar OK in se, but the communication around all that is difficult.

12 months ago

Hi, my head is in turmoil as ive had RRMS for nearly 27years. A long time ago i very briefly tried Copaxone, Rebif and Avonex but had allergic reactions. So i went back to continuing my life drug free. For years i keep being told i must try DMTs however i am seriously worried about JC virus and PMLs. Is there now a test for the JC virus? Can a PML be stopped? Are these risks for Zinbryta? Ive been reading online but im none the clearer!
I have 2 toddlers and the JC virus and PML risks are to high for me. Thank you, any advice would be greatly appreciated

12 months ago

@nikki , we need to keep the risks from drugs in context.

Life comes with risks. That is why we look both ways before crossing the road, to mitigate the risk of getting knocked down.

Taking these powerful drugs is no different. PML is a known risk, so monitoring is employed to mitigate this risk. The Doctors look both ways to see if it’s coming. If they get an inkling that it’s just out of sight, your treatment would be changed. 😉

12 months ago

But Stumbler just some risks to some people can be a risk too high. As with most drugs they are given to treat one illness but potentionaly create more problems. JC Virus and PML are big risks for all but we need to bear in mind we could be one of those statistics! Fingers crossed for all we wont be and MS research goes from strength to strength where these risks don’t exist.

Potential Cancer risks hits a big nerve for me too having seen my Mum suffer on and off with serious cancer for 37years, she is on ongoing treatment. I have seen my grandad, my dad and my father in law go through horrendous cancer too.

I know all illnesses are different you must never compare them but not all drugs are always there to help us. Everything we do in life is a risk from eating, walking, driving, flying, operations, medications…

But if its not quite broken yet do you wait and see or do something about it now and chance other risks, like Liver Problems, Cancer, JC Virus and dying prematurely. Life is all a big question and risk.

So far ive been extremely lucky with my MS Challenge in life despite it always being Active and in pain, but i know others are not so lucky. Ive self learnt how to manage it, ive always maintained if you have fatigue keep trying to push yourself to do something really energetic.

If you are able to walk keep walking instead of driving etc. Try not to sleep all scrunched up as this makes my arms and legs very heavy, pins and needles and tired. Not drinking alcohol has stopped my pins and needles.

As soon as i feel a cold coming on or someone close to me has one i take paracetomol to fight it before i actually get it. MS pain is dreadful but learning to cope with pain can help.

Everyone has thier own ways of dealing with stuff but i think after all these years i am niaive about what can happen in the future and am i prepared for it…NO. I think living life as full as i can now and enjoying it is a bonus, you never know what will happen tomorrow. Although with a 5 year old and 3 year old theres not much enjoying going on…just a ton of unhealthy stress! Its tough especially as i Home Educate them as catching all the viruus from school was too much.

I commened everyone who has and is brave in trying these different drugs. I hope they work for you.

Im hoping Zinbryta will come up in my appointment tomorrow as i have queries about it but i still doubt i will make a decision, everytime i said yes to Tecfidera i ended up changing my mind from reading all the helpful reviews that people have left on Shift MS.

Thank You Stumbler you are great fountain of Knowledge
A big Thank You to all those on the Shift MS team and to all those with MS who are all trying to help in our fight against MS in one way or another

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