@mser79

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mser79

The restarting of Ocrevus after coronavirus delay

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

Will_Berard

@Will_Berard

Had my third six-monthly infusion scheduled for August. It was cancelled, then put back to September. I'm with the Imperial College NHS trust.

mser79

@mser79

@will_berard thank you. How are you finding Ocrevus?

Will_Berard

@Will_Berard

@cathy I've not had any flares nor relapses since switching over from Tecfidera about a year ago. Prior to that, I would have a relapse about once a year. Overall, A++, would recommend ("Five stars, will modify again!"), although everyone's different, etc. No side effects save for the boredom of the infusion (and a bit of a rash, that went away when they pushed more antihistamine). I've not observed any greater vulnerability to day-to-day infections. Then again, I work from home and don't have kids, so I'm not hugely exposed to them, as a baseline. Some degree of relief from day-to-day symptoms, though the placebo effect is obviously in contention.

mser79

@mser79

@will_berard thanks for this Will. Really good to know. One of my previous DMT's has been alemtuzumab, on which I did find myself very susceptible to any virus going. So I'm hopeful that on Ocrevus things will be a bit more sustainable. However I work in a University so fairly exposed... Although in the future I expect I may be shielding and teaching online as we are now. Are you currently shielding?

mser79

@mser79

@will_barard so your third infusion will be just 7 months delayed, the National have moved to dosing every 9 months. For existing patients...

mser79

@mser79

@will_berard so your third infusion will be just 7 months delayed, the National have moved to dosing every 9 months. For existing patients...

bops6

@bops6

Hi, I was due to start ocrevus in April. My hospital had said they won’t start any one on it at the moment. Gutted as it’s my only option with PPMS . I’m in Leeds , Yorkshire .

Will_Berard

@Will_Berard

I'm not particularly shielding, not in proper self-isolation for 12 weeks. The detriment to my mental health wouldn't be worth the protection. :|

Bernadette

@Bernadette

@cathy good that you are being offered a decent drug, and that your previous one was too! I'm surprised in a way. I was initially at your treating hospital I moved to another Trust for my care. I could no longer tolerate it. Their delays, chaotic communication, lack of organisation, AND they only offered the crappy old drugs... nearly drove me around the bend. I had my first Ocrevus in Jan/Feb, and number 2 is in July. I contacted them today and it will still be going ahead, however probably not on the exact date. In order to carry on treating - which they did- they needed to move into another building - leaving the other one free for the virus patients influx. There is a real positive can do attitude there (Barts/The London) the complete opposite of what I experienced at the other place. My email was answered within a couple of hours by the way. It takes a while for Ocrevus to kick in (apparently 8 weeks) and when it did for me I felt a lot better, noticeably my balance and fatigue. I've had no infections and I did not Shield. My GPs surgery contact me 2 weeks ago to say I should (bit late mate ;-) but I had done my own exploration of the topic.There is now sufficient evidence to say it's not a DMD that increases infection risk seriously. I have however self isolated as much as possible, went into personal lock down a week before official one and am planning to Stay Safe and Stay at Home for another few weeks. Primarily because, as any PwMS know, avoiding infection is part of what we do for self-care. We all need to be careful at the moment as the data suggests a surge of deaths in approx 3 weeks as Jo Public stop distancing. Good luck

Ray_Thomas

@Ray_Thomas

Hi My next infusion ( second sixth month ) is on 21st July at Denmark Hill SE London Not cancelled yet, but I will be surprised if its not Also a MRI at the same hospital - expecting that to be cancelled too Which I could cancel my MS !

mser79

@mser79

Thanks @bops6 @will_berard @bernadette @ray_thomas Really great to have your perspectives.. @Bernadette I wish I could swap toBarts/The Royal Ldn, but I'm guessing that you live in London? in their catchment? I don't any more, I live 2 hours away in the south-west, but can be treated at The National as it is a national prescriber. The communication is really bad at the hospital even though I have a really good, ten year, relationship with my neuro which I don't particularly want to sacrifice. The approach is just far less aggressive than Prof Giovanoni's and the team at Barts. Really good to hear everyone's experience of not shielding @will_berard @bernadette. I work in education, so in such an exposed job I think I will not be able to go into work on ocrevus whatever. I feel like we need to advocate for a standardisation of infusion times, as there seems to be variation here from service to service, hospital to hospital.

Will_Berard

@Will_Berard

"I feel like we need to advocate for a standardisation of infusion times, as there seems to be variation here from service to service, hospital to hospital." Actually the variation is from patient to patient - the protocal is simple: the flow rate is increased at every 30 minute checkup, until you either have an infusion reaction, or you're done with the bag. In the case of the former, they turn off the pomp for a bit, if that doesn't help, they pump some corticosteroids and/or antihistamines into you, and then they resume, starting with a lower flow. So a lucky patient may be done in three hours, another one in six, on the same day at the same hospital. Last time I was the last one out of the Ocrevus Cohort by a couple of hours. Saw the change of nursing shifts. The previous time, I was done early.

DominicS

@DominicS

They are starting patients on Ocrevus at the Royal Berkshire Hospital in Reading on a case by case basis. Essentially, a common-sense risk-benefit appraisal with the patient. And why not? It is entirely possible that breakthrough MS activity may be of the nature that it is worth it. I slid onto it a year ago because I agitated for it and was planning well in advance. There is no way I('d sonvinbce3 anyone to let me on it now. I don't have any disease activity. However, to think any worthy recipient was being denied it because of a blanket approach top risk rather than considering the individual circumstances is rather worrying. All the case reports so far of ocrelizumab treated patients who have caught SARS-CoV2 (Covid-09) whilst on ocrelizumab do not suggest that the drug had any influence on the course of the disease. I like to turn the question around and ask them to enumerate the reasons why I may not have it. I take smili8ng non-aggressive notes and if asked reply that I need to refer to them later as my MS addled brain cannot recall things correctly otherwise. The reasons may be entirely valid. who knows? You may feel that you don't agree and are willing to take on the risk-benefit idea (something I'd encourage them, to explain what they feel it is, nothing woolly, make them give specifics) so you need to ensure that they record your request and their denial, along with the reasons, in your notes. It ought to at least give them pause for thought and treat you as an individual and not just a 'because I said' patient. All the best.

DominicS

@DominicS

@cathy I too am on it - 3 full infusions so far - not bothered if they delay as my B-cells have been kicked to the floor and pummeled by now. They ain't getting up anytime soon! - I was on DMF (Tecfidera) and this is vastly better. I haven't had a single issue and they infusions are getting much shorter as the clinical teams are used to giving it now. I was the first in Oxfordshire and there was far more faffing (understandably) with the first two. Last time it was a few minutes under 4h. - If you aren't happy with where you are - they sound a bit disorganised - then take the initiative and move. As Prof G is found of saying - time is brain. - best

dunners

@dunners

Hi everyone, I was due to have my 3rd ocrevus IV but it was cancelled in March due to covid 19. I haven’t had an update to when I’ll get ocrevus again. I don’t care what they say about DMD only help with relapse severity and regularity, I think they help with symptoms too. Recently I started to ache all over my bottom half abit like toothache, I find it difficult to sleep as my legs feel like they are possessed! I haven’t had theses symptoms before so I’m thinking it’s because I haven’t had the ocrevus shot. Anyone else feel the same about their DMD? It would be great to hear if anyone else feels the same as the ms team at my hospital say it’s just another symptom! I think the ocrevus helps with symptoms too! Feeling alone, Dunners