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Opinion on what is happening to me

Hello Bertie here

Saw my Neuro Consultant 5/11/19 and it was proposed I go on Ocrevus, I have been on Tecfidera for over 3 years

Proposed a scan on head and neck.

No relapses or new lesions but my walking speed had dropped 25 metres 119 seconds from 52 seconds in 2015

Another letter out of blue to GP give him Methylpredinisolone 500 mg for 5 days as well as Lansoprazola 30 mg

Took the steroids and my condition went down hill fast.

Nightmares sleeping could not walk, desperate.

Rang up, what is going on ? MS nurse rang do not meet criteria for Ocrevus, no relapses

Condition now more stable after 7 days, MS nurse said may go back to normal in 7 weeks

Has anyone had experiences like this ?

Bertie

Hello Bertie / David

If you’ve had no relapses, why on earth were you given steroids (Methylprednisolone)?

High dose steroids do make you feel like crap. They massively interfere with your sleep and generally make you feel like you’ve had a good all over kicking. From a professional kicker. Your MS nurse is quite right, you will feel better after a few weeks.

If your MS has been relatively stable on Tecfidera, and you’ve been relapse free, then you wouldn’t meet the criteria for Ocrevus.

I hope you feel miles better over the next couple of weeks.

Sue

Thank you Sue Do you know what the criteria is for Ocrevus, do you have to have a recent relapse, I do not want one but I am just trying to get my head round what is happening. I am glad I posted this because I have been in a daze for 7 days Very grateful for your knowledgeable and understanding reply. David

Hallooo David

If you look at https://www.mstrust.org.uk/a-z/ocrevus-ocrelizumab Ocrevus is licenced for Active and Highly Active MS.

The definitions of Active and Highly Active are here: https://www.mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds

Active means you’ve had at least 2 relapses in the last 2 years or Highly Active, meaning you’ve continued to relapse despite taking a DMD.

So if you’ve been stable with no relapses on Tecfidera, I can see why you wouldn’t qualify for Ocrevus. Kick in the teeth though it is. At least Tecfidera doesn’t give you side effects and appears to be keeping relapses away.

Sue

Thanks Sue Good information, strange my neurologist proposed it. She then got knocked back by the committee. She then issued steroids Does not make sense. Lost a bit of confidence in her. She has proposed another scan in 6 months I am slowly coming round after the steroids David

You know David, I’m kind of in a similar situation. I was relapsing remitting for most of my years with MS. Then it was decided that I was probably SP because I’d had no relapses for a long time. I don’t really know why the neurologist didn’t think a bit harder before calling it SP. He did say that chances were that because I’d had to stop Tecfidera because of low lymphocytes, I was probably being protected from relapses because of the time it took for the lymphocytes to recover.

This year, I’ve suddenly had two relapses. One mostly sensory stuff, but the other a proper motor relapse. I couldn’t move either leg (not so strange with my right leg, but I’ve almost always been capable of moving my left leg!!). Luckily, I already had some steroids (in date!) and the wherewithal to test my wee to ensure I didn’t have a UTI (nb. this is important before you take steroids!). So I took the steroids within about 3 days of the relapse starting. And they worked brilliantly. So well, I even had some improvement for my right leg - after years of it being virtually useless.

So I’ve had an MRI (already arranged for the day before the relapse began - strange how some things just fall into place!), it’s shown active inflammation and two new brain lesions. So the neurologist now thinks he’ll apply for Copaxone for me. (Considered Ocrevus but it’s too risky for me - too many bad DMD reactions!) I’m now classed as being Progressive Relapsing.

But, the guidelines set by NICE are that you should have had 2 relapses in the last 2 years (check), and be no more than 6.5 on the EDSS (Expanded Disability Status Scale). Ie. able to walk at least 10 metres using at most two sticks. I am rated as 7. I can’t walk more than a few metres with a walker. And so I wouldn’t qualify. In addition, the only DMD recommended by NICE for PRMS is Interferon 1b aka Betaferon. Not Copaxone.

So I probably won’t qualify for anything!! It does make you question the neurologist when they cock things up! Unless he’s planning to a) relabel me as RR, and b) lie about my ability to walk. In which case it makes me question his judgement.

At least Tecfidera is doing it’s job for you!!

Sue

Thanks Sue Got yet another letter off my neurologist, nothing really new but my steroids symptoms have shaken her a bit. Had a good nights sleep last night and a bit more active today even ventured outside with my stroller. Going to Southport Pier on Tuesday with scooter and will try and walk a few metres with my stick I do hope they do not stop the Tecfidera my blood count is now Lymphocyte 1.6, as she has said if the white blood gets too low treatment may be stopped David

David

Low lymphocytes = less than 1.0. Most neurologists will keep you on Tecfidera up until your lymphocyte count is reduced to somewhere between 0.5 and 0.8. So don’t worry, you’re well in the ‘normal’ range. No danger.

Best

Sue

Sue Good news, did not know that. I will now have a happy day in Southport and treat myself to fish and chips. David