@Murray

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Murray

Ocrevus

Hi Has anyone had any news regarding DMT treatments in the UK now? My MS nurse is waiting to hear when they might be able to re-start, and I am on the list for the initial Ocrevus infusion - hoping this will be soon, of course.. Wishing you all well.

bops6

@bops6

Hi, I’m waiting too. My hospital is in Leeds , the MS nurse has no idea when they will start with initial ocrevus infusions. I’m number 10 on the list apparently . Stay safe everyone .

Murray

@Murray

Hi @bops6 My hospital is in Cornwall but if I hear anything I will let you know anyway. All the best

Bernadette

@Bernadette

@murray I am due to have Ocrevus 2 in July, I'm told it will still be then. I am treated at a London Hospital. There were a couple of weeks early in the Pandemic when they stopped infusions as they moved into an adjacent building to protect their PwMS from the influx of Covid. It depends on your treating hospital from what I have read on a number of previous posts on Shift. Who is the Neuro Lead and what do they think about it? Politicians have been saying for weeks 'the NHS is open for business' Really ? I know they talk about what they hope is happening, rather than the actual reality. Being told there is a hold on any treatment is an organisational decision. If I were you I would challenge them as to why. I know many people working in hospitals, most of whom tell me that away from the Covid clusters there are many staff and departments largely unused. Hope you get treatment asap.

Murray

@Murray

Thank [email protected] That gives me renewed hope that treatment is on the horizon. And I wish you all the very best with your treatment 2.

pauley

@pauley

Hi, @bernadette @Murray Hope all are well.. I was told on April 1st that I would be starting Mavenclad...date I was given was October 21st...to allow for a better control of the Pandemic....its very long to have to wait...its not helping... I really need to get started on treatment... July doesn't sound that far away Have a nice weekend guys n gals Dont forget to Support World MS DAY...in your area.. Our society organised a balloon race, which has been changed to a virtual balloon race, starting 9pm tomorrow and finishing June 6th......Do something...anything..even just give a few quid.. Enjoy the great sunshine...'Make hay while the sunshines'

Bernadette

@Bernadette

@pauley 5 months wait ?! What a load of tosh. As the pandemic, aka excuse for faffing about, is under much better control in Ireland - where I see you are - I'd get back onto your MS team and tell them to get on with it. Of course you need to start treatment. Wherever you are it seems as PwMS we all have to fight our corner. I would say get back to them before they start using the summer holidays as their next excuse. Tell them you want to start now. End of. Good luck

Murray

@Murray

Hi @bernadette @pauley @bops6 I have received notification that, in Cornwall, the Ocrevus treatment should start in the near future. Hoping that it is my definition of the near future, which is before the end of June but perhaps that is too much to hope for. October for Mavenclad must feel a long way away. I hope you can get a bit of movement with your MS team. @bops6 have you heard any more from the Leeds team? All best, hoping you are enjoying summmer weather.

bops6

@bops6

No news when it’s starting here in Leeds . It’s frustrating.

melanie77

@melanie77

I’m waiting for my first infusion, was due to have it in March at kings in London .They decided they were not giving the infusions the week I was due to have mine. Gutted. I have not heard anything about restarting them

Bernadette

@Bernadette

@bops6 @melanie77 in my experience of hospitals unless people who need treatment keep on to people in their MS departments, keep reminding them, put pressure on often there isn't the impetus to sort this out. I include your Consultants secretaries in this loop not only your MS nurse. Or even the Department Lead for MS within the Hospital Trust. Be annoying if you have to, especially before the summer. Quiet and compliant gets you nowhere. Everytime you are not given a date or more information I would ask the question WHY? Good luck on this MS day. XXX

Ray_Thomas

@Ray_Thomas

Hi I had a letter for a MRI can in June and Next Ocrevus is on July with a appoint to see specialist in between ... all at Kings, Denmark Hill I will be surprised if any of them go ahead - even though we are re assured that us business as usual.... Not convinced

Debbie_Titley

@Debbie_Titley

I am waiting to start ocrevus and had a phone call on the 3rd of june saying they would call back in a couple of months to reassess really not happy been waiting since January

Ray_Thomas

@Ray_Thomas

@debbie_titley You must be gutted. I know I will be if mine is cancelled (July)

Bernadette

@Bernadette

@murray I have been given the date of July 22nd for my second Ocrevus, here's hoping there isn't a second spike prior to hope you have had a date for yours by now.

Murray

@Murray

@bernadette, it's great to hear you have a date for your treatment, and I am keeping my finges crossed for you that the second spike is long after July (in Cornwall they are talking of this being October time). I have not yet had a date for mine but am having bloods done tomorrow and hope to be cleared for treatment soon after. In the meantime, I have managed to fracture my leg, and am hoping this will not affect being given any treatment - I am not going to inform the MS department and hope they will not notice!

Ray_Thomas

@Ray_Thomas

Good news - MRI stable - no mew leisons Next infusion postponed from July to September