Last reply 3 months ago
I’m told NO to ocrevus

Not sure how I’m feeling but found out today I don’t fit the criteria for ocrevus because no new lesions since last scan even though my PPMS symptoms are worsening. Feeling pretty rubbish. Busy mum of 3 with job and doing a masters and everything feels so uncertain. Also got refused for blue badge this week. Would be grateful for any words of wisdom/support. I am still newly diagnosed so still learning how to deal with my MS.

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12 months ago

@cathie16 , I’m so sorry that you’ve had the Ocrevus knockback, following so soon after the Blue Badge knockback.

We have to live with uncertainty, but, to be honest, everybody lives with uncertainty. We just have the advantage that we have to take a bit more care as a matter of course.

You’re presently “pushing the envelope”, being a working Mother of three and doing a Masters Degree. You sound like a very driven lady, managing all of that and I wish you well with your Masters. However, you seem to be holding the door open and inviting stress to come in. And, stress can be a major antagonist of MS.

You have to carry on down (or is it up) this path as this is what you have worked for. You just have to be careful to manage any stress as best you can.

Take care.

12 months ago

Hello @cathie16, welcome to Shift! I have to say, I don’t quite understand the criteria. My sister has PPMS and she is currently undergoing tests too. Ocrevus has been a real breakthrough, and most likely the first of many. Keep switched on to all the current research being done. Also, do you think it might be worth getting another opinion?

What sort of job do you do? Sounds like you have a busy life and don’t make things easy for yourself! Being newly diagnosed is total pants. You need to be really kind to yourself, and don’t push yourself too hard. Never feel guilty about resting as much as possible. You don’t have to prove anything to anyone. Getting used to this diagnosis really does take a while. You will go through lots of emotions, and it’s important to feel them.

There is lots of support for you on here. You aren’t on your own, there are lots of people here that will really understand what you’re going through at the moment. Stay well, eat and sleep well, slow down and don’t get stressed, cos stress is our enemy x

12 months ago

@stumbler, thank you for your words of wisdom. Frustrating times but reassuring to know I’m not alone.

12 months ago

@vixen thank you. You are so right about the emotions, I’m so up and down. Now is a good time to be developing my MS networks x

11 months ago

Hi @cathie16
It is definitely worth getting a second opinion if you can.
My doctor refused to give me any medication at all as i did not fit the criteria fo RRMS. I located a hospital that was not too far from me in Guildford.
The difference between that consultant and the one I had been seeing was amazing. I was immediately recommended for treatment and started on Tecfidera. Altho it hasn’t done anything for me but the fact that someone said that I do meet the criteria was great. Next week i do hope to be able to try for Ocrevus.

Good luck

11 months ago

Hi there 🙂 all this is so new to me to, I had one mri to diagnose me and two weeks later I was on Orevus, I don’t even no what the criteria was my neuro followed but it was pretty quick moving, I feel fine, my attacks are minor and not very often. I just hope this all keeps up. I agree maybe get another opinion? I don’t understand how some people are on no treatment, some people have MRIs every couple of years, while I have them 6monthly even tho everything is stable and I just thought everyone got treatment. You sound like a superstar busy mum of 3, I hope you get some answers and progress soon, definately talk to another Neuro I say. Best wishes and goodluck!

11 months ago

Is it the NIH?

11 months ago

@ betsy brown and @mrsking – its York Hospital but to be fair the consultant and nurse are pretty good. I’ve gone through the NICE guidance and spoken to NHS England and I just simply don’t fit the criteria at the moment as no new lesions. I’m feeling a bit better about it after the initial concerns – I would rather hold off and access treatment that is more effective for me (fingers crossed). Still having shitty tiring days but some days are better than others.

@mrsking if you have PPMS you are eligible for Ocrelizumab if you have new lesions confirmed by two MRI’s at least 6 months apart or one or more gadolinium enhancing lesions on one MRI scan (so maybe you are the latter?).

On another note – does anyone get restless legs and involuntary movements on a night when they are trying to relax? I don’t get it every day but it drives me mad when I do – trying stretches, meditating, pilates – any other suggestions?

11 months ago

@cathy16 it sounds like a lot of people here get twitchy legs, I guess I’m not alone 😉 my husband had recommended over the counter magnesium which we had on hand as he uses it and I take one first thing with breakfast and another right at bedtime. Of course I also make sure I drink some milk for calcium. I think that helps. Another poster had mentioned a prescription they get.

11 months ago

@cathie16, I’ve had twitching legs for years, until diagnosis of SPMS last December. As soon as I was diagnosed, the GP prescribed me Amitriptyline, which I take a night. As soon as I started taking it, I instantly had an improvement in both quality, and quantity of sleep. My jumpy legs were gone (at least overnight) as well.

I’m not a medical professional, so don’t take this as a recommendation. Its simply a view on what helped me.

It did take a while to get the dose right for me, but it was worth it. The morning (I start work at 7) is the best time of day for me now until it wears off around mid – late morning.

11 months ago

@itsmewithms, not sure if it’s just restless legs or spasms you have but I use CBD oil for spasms
which helps with mine. The ms nurse suggested
Baclofen but it’s not enough on its own but I find the combination works.xx

11 months ago

I started taking magnesium for twitches and restless legs on the recommendation of my MS nurse. It helps lots, I now notice the difference if I forget to take it for one day.

11 months ago

Thanks everyone!

11 months ago

@cathie16 getting Ocrelizumab on the NHS has a vast amount to do with the neurologist.

I don’t know the time or available resources. You can request that your GP refer you to a neuro of your choosing. They cannot refuse to do that.

If it were me I’d be off to some of the London neuro like Ben Turner, Omar Malik, Gavin Giovannini and the like.

NHS will see you wait a min 6 months. Private will get you a queue jump at c. £300 give or take.

I saw Malik on the NHS prior to Ocrelizumab being licenced. He wrote my neuro a letter suggesting I went on to it as soon as practicable. It was the nudge required.

Consequently, I was the first in Oxfordshire to receive it.

It is FAR harder for your neuro to refuse you then. You could quite legitimately ask them to explain why they felt differently and write to your GP explaining their decision. Most will cave at that point and do it.

I urge you to approach the problem laterally. A head on won’t get you far. More than one way to skin a cat.

As for the badge. I am in an ‘interesting’ exchange with my council re Blue Badge. I have just discovered someone I previously helped for something has taken a post as a lawyer there. Watch this space 🙂

PM me if you like.

3 months ago

My doc wants to put me on Ocrevus. Only I am not starting it in the middle of a pandemic. The reason why she is putting me on it is because my symptoms are getting worse… so strange how different docs do different things..

3 months ago

Hi Cathie
Going to London when you’re in York or near is going to be a stretch and I would consider @dominics advice carefully as things like monitoring, relapse care etc will then be down to your local MS nurse.

I have changed in the past as I was frustrated by a slow approach of my neurologist (not naming names!). You might consider the MS centre at Sheffield as being the Northern beacon of hope. Barts isn’t taking out of area referrals at the moment anyway.

Try again with the blue badge as the issue usually is that they don’t understand variable conditions.

Wishing you well

3 months ago

Hi @cathie16 So much of what you have written resonates with my experience, as I was also diagnosed PPMS last year, and my worsening mobility is not reflected in my scans so I did not meet the criteria for Ocrevus either. I did get a blue badge tho, and that was surprisingly straight forward. You should reapply, and make sure you emphasise the bad days and worse case scenarios. I wouldn’t be able to function now at work without mine, so it’s worth persevering. I am about to try Baclofen again for leg spasms – there’s lots written on here about it, and you can use the search facility to find out more. So much seems to be trial and error in finding the right balance between keeping moving and looking after yourself. I thought I was coping with all this really well, but as others have said, it’s quite a process and can be hard to stay positive and motivated when the legs aren’t doing what I want them to! Hope you have a better outcome with the next blue badge application 👍

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