Continuing the discussion from Ocrevus treatment:
Hi does anyone know what criteria needs to be met before being offered ocrevus? I havnt been diagnosed yet but I know people who are really well on ocrevus.
Will depend where you live. If in the U.K. look at NICE, MS Trust and MS Society websites. Your MS Nurse should lead you through this but the decisions are in the hands of a consultant Neurologist specialising in MS. It pays to understand the system but you need to be in the system.
@Mumof2 You’ve not even been diagnosed yet but you’re lining up your choice of treatment in the anticipation of a diagnosis. Please stop for a moment and consider how offensive that might seem to some of your target readers.
You appear to be getting off on the attention and treating the selection of medication like a window shopping trip. Maybe come back to us with such questions once you have a diagnosis and your questions carry soe weight?
The people reading this will mostly be people who actually have MS and are dealing with the implications of that. The pain, loss of faculty and lifestyle are really not fun. Please stop.
Graeme
Thank you. I am awaiting confirmation of what type of ms I have. The ms nurses have been great so far but until I get type confirmed can’t move forward. My consultant advised me to look at the various treatments as outlined on the ms trust to consider when the time comes to discuss treatment options
Honestly don’t be so rude! This is supposed to be a supportive forum, not that it’s your business but I am just waiting confirmation of what type I have but I know it’s def ms! I would hardly think looking at different treatment options is treating this like a shopping trip but more getting equipped with knowledge needed to find best treatment for me. How rude of you!
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Sorry @Mumof2, I took the line [quote=“Mumof2, post:1, topic:68434”]
I havnt been diagnosed yet
[/quote] to mean that you hadn’t been diagnosed yet, not that you hadn’t been diagnosed with a particular type of MS.
Clearly I picked on your statement as the wrong example, but I do think there are an increasing number of people coming on the site who are too lazy to do their own research and use the unfortunate MS sufferers as a source instead.
Would just like to wade in on this a little if I may?
Went to the doctors in Oct 2020 with typical symptoms. Saw someone in June 2021. Got sent for an urgent MRI. Saw a neuro just after Christmas 2021 who said if it was down to him, he would diagnose me right away with MS, but he had to refer me to the consultant. Consultant said I needed more tests.
I’ve cut the story quite short there, but to conclude, I was officially diagnosed two weeks ago. Almost two years since I had a bad relapse that left me struggling to walk, but 8 years of symptoms that no one knew what to make of it told me it was stress and anxiety.
I have known since the first neuro Xmas 2021 what it was as well as knowing in my own head for some time because my Mum had it, but because I am not official, talking to anyone with MS to get a point of view has been very difficult. Sometimes I’ve felt as brushed off as the doctors have made me feel. Saying my Mum had it has almost been a red rag to a bull for some. Yes I know it’s not hereditary, yes I know that doesn’t mean I have it, but I lived through it with her and I know what the very obvious symptoms that strongly point to MS look and feel like. And yes I know my path will not be the same as hers.
I feel that no matter what people have or have not been diagnosed with, no matter their official diagnostic title, they all deserve some empathy and patience. Didn’t we all want it when we were waiting for what felt like forever to be listened to?
So today as it stands I am waiting for my blood test results so that I can be rushed through to start Tysabri as my MS has been classed as very active RRMS.
If someone’s post pushes your buttons today, move on. Or read it again tomorrow when you may be feeling less tired and more patient.
Xxx
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I am just being tested to see if I can start Tysabri, if I can’t, then the next one is Ocrevus.
I have RRMS, but it is very active, so that’s why I have been offered these two. It depends on many things, including post code lottery I believe?!?
Anyway, look at Tysabri as that is currently my first choice. Fingers cross my blood test comes back good enough to go on it!! 
Xx
I have a very quick question as I’m being offered category 2 drugs including the infusion - what constitutes highly active RRMS?
For me, it was because of the results of two MRIs that were 9 months apart. The second one showed that the original lesions were still active and there were several new active lesions.
Thanks @Foxy this is where I’m struggling/confused - I’ve only had one in the last year with new lesions, the most recent. Luckily very small and in the brain. Also what drug did you end up taking?
Mine are all in my brain, except one, maybe two now. I think my next MRI is Sept/Oct time.
I picked Tysabri. After speaking to my MS Nurse, it seemed like the obvious choice. She highly recommended it and said it’s the one she would pick if she were in my shoes.
Have you been able to speak to anyone as to why they have come to this decision?
X
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I have my appt on 22nd but interestingly after following up, was told on email I can still have tecfedira. No idea why this wasn’t said in the first place. May have saved me a lot of stress and tears.
Hi, i was finally diagnosed with PPMS just over 4 years ago and was offered Ocrevus. Ive been having the infusion every 6 months with no noticable side effects. Hopefully it’s slowing down the progression. I use a rollator for short distances and a wheelchair or buggy for longer distances. Luckily i can still get to the local pub and back with the rollator!
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