Hi

After 4 years on alemtuzumab I was due to move to Ocrevus (following breakthrough activity) in April. Bad timing. I'm treated at the National Hospital for Neurology and Neurosurgery, and was told yesterday that infusions the new patients might not be available until September/October. A huge cause of anxiety as I am currently living with  nerve pain and the obvious risk of more relapses. 

I am interested if anybody else at different hospitals is able to begin treatment on Ocrevus, Cladribine or Alemtuzumab, any sooner. I know NHNN is often more cautious at prescribing,  and I know that this is currently the national guidance on prescribing these treatments , but I was keen for any other peoples' news about when we might be able to start treatment and I wanted a comparison from another hospital. 

Would be grateful of any experiences/news.

Many thanks




The restarting of Ocrevus after coronavirus delay

This is a long post, so I apologise in advance. I was due to have my first full dose of ocrevus at the end of March. Having made contact with my MS team in the weeks leading up to this to check that I should still go ahead in the current climate (Coronavirus), I repeatedly got the answer back that my consultant wanted me to continue as planned as he was concerned that the risk of delaying outweighed any risk of coronavirus. I turned up at the hospital for my appointment as planned (more than an hour's drive away) having pleaded with the school to have my children (it was the first week of lockdown). When I got there, after waiting around for a while, my nurse turned up and told me that I couldn't have my infusion after all. Basically, the registrar wouldn't sign off my prescription, as she couldn't get hold of my consultant. My nurse gave me a sheet with some new research from Sweden that claimed that ocrevus provided you with cover for longer than 6 months (how much longer??). Then the registrar turned up out of breath saying I could have it after all, but that I and my whole family would have to shield for 12 weeks. I said that this would be impossible as my husband is a GP and needs to go to work. When I asked what we were supposed to do she said: "He'll have to find somewhere else to live". And with that she left. I told my nurse that I couldn't possibly go ahead under the circumstances, with no notice so I went home. She called me after the weekend to say she had got in touch with my consultant who confirmed about the shielding but also said that it would just be me that would have to shield and not the whole family. However, he agreed with this new research (which is based on another similar drug), and agreed that I could delay if I wished. I decided to delay, as even if only I shielded, it would be very difficult to do while looking after my three children and my husband going to work everyday where he is at relatively increased risk of infection and bringing it home. I've heard nothing from my team since then - it's now been just over a month. I'm sorry this has been such a long post. I suppose I just wanted to know if anyone else is in a similar situation, and, if so, have you also been asked to shield in the first 3 months of taking a dose of Ocrevus? I am just very aware that the social distancing may be in place until the end of the year and I will have to take my dose at some point. How can I do that while my husband is in a high-risk job? We don't live in the city where frontline staff have been given alternative accommodation... Also, what do I do once schools reopen and my kids go back to school?? How can I look after them if I have to shield?

/Health

Ocrevus: delaying v shielding

Test new post

Afternoon all, 
&#8211; 
Not sure when I ought to drop the Covid-19 tag from the headline. I think it should last as long the lockdown lasts. We see the conversation subtly changing now to more of the looking ahead. You can’t panic forever. 
&#8212;&#8212; 
MS Stuff 
&#8212;&#8212; 
I still see people asking about the risks – or otherwise of their DMT in relation to Covid-19. It is worth repeating that the risk of catching it doesn’t come from either MS nor the DMT you may be on. There is theoretical risk based on a few drugs/treatments, the point you are at in the treatment cycle and, amongst other things, your lymphocyte count. To date, there have been no Covid-19 related deaths where any additional issues were thought to have been caused by a DMT. The best advice top date about the risk factors associated with all the DMTs (UK list) is here: https://docs.google.com/spreadsheets/d/1GqEoeXod4CLTBsa6ke0TWmiJ7_I77HiBQ_rvFrmouOA/edit#gid=0
&#8211; 
Another thing to remember is that we – the MS community &#8211; are far from the only lot of people to receive immunosuppression treatments. The rheumatology community went through a similar cycle of being massively concerned at first and then gradually more relaxed as data emerges. 
&#8211; 
APPLICANCE OF SCIENCE, WHEN AN AUTOIMMUNE DRUG HELPS https://multiple-sclerosis-research.org/2020/04/applicance-of-science-when-an-autoimmune-drug-helps/ 
&#8211; 
Being cooped up, under lockdown, isolating, quarantined, in confinement (C19 pregnancy leaps to mind?) means that more than ever we need to avoid losing our marbles. Dr Aaron Boster has made this short video about staying sane and managing stress: https://www.youtube.com/watch?v=OaONzqBY27g&amp;feature=em-uploademail 
&#8211; 
More of the talk about returning to normal is vaccine talk. It is critical to understand that, whatever a friend of a friend on Facebook who knows all about this stuff says, it will be a year+ away. Talk of September is an utter manufactured pipedream. This piece explains just what, why and how and more importantly, what this means to pwMS: https://multiple-sclerosis-research.org/2020/04/mscovid19-vaccines-and-dmts/ 
&#8211; 
If you haven’t ‘seen’ your doctor yet via video, it is a matter of time. Aaron Boster shares some unexpected effects for him of being teleported via the magic of video, into patients homes: https://www.youtube.com/watch?v=okjQwhiJ-gY&amp;feature=em-uploademail 
&#8211; 
2/3 of new diagnoses are women around the age of 25. A ti9me many are turning their thoughts to pregnancy. Prof G explains the way forward through this and why you cannot just postpone your (and a new presumably) life because you have MS and there is Covid-19 floating about: https://multiple-sclerosis-research.org/2020/04/mscovid19-what-about-pregnancy/ 
&#8211; 
Tired of being tired? I fell across this and it seems interesting: https://www.youtube.com/watch?v=s2hxb5vCN74 
&#8211; 
Still not bored or tired? I guess you have excellent neuroprotection. Time to read a little more about the possible drugs that aid in this. Fampridine and cannabinoids: Neuroprotectives? https://multiple-sclerosis-research.org/2020/04/youre-had-neuroprotectives-for-years-you-just-dont-know-it/ 
&#8212;&#8212;&#8211; 
Social Stuff 
&#8212;&#8212;&#8211; 
Mrs S is a teacher and the Covid-19 lockdown has expo0sed just how woeful the state of IT is at her school. I am now tasked with sporting out some software to make videos for her. 
&#8211; 
Laters. 2m. Just do it.

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Daily Briefing Covid-19 [Apr 20th &#039;20]

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Oh testing post button

I'm just seeing if you can edit this once posted

new exciting topic

Hi guys hope everyone is keeping safe in this new world order we are going through! 
I am writing this post as I have rrms and have been receiving natalizumab ( tysabri ) at monthly treatments for last 9 years and I am switching to every 6 weeks instead of 4.

Can anyone out there describe in any way what that change will be like?
I resisted for a while as I'm a "ain't broke, dont fix it" kinda person but due to pml risks and the current health crisis I have changed my treatment plan and was hoping anyone could give some tips on what to expect?
Keep safe and remember rule 32 of the zombie apocalypse!

Tysabri changes...

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The restarting of Ocrevus after coronavirus delay

Ocrevus: delaying v shielding

Test new post

Daily Briefing Covid-19 [Apr 20th '20]

Just joined using my Facebook account

Oh testing post button

new exciting topic

Tysabri changes...

More testing

Apparently this is my first post

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