Anti Viral Drugs - Covid - CEV

[Investigator1]

Hi Everybody, I know some people have posted some information regarding this matter but I thought I would share the information my specialist gave me yesterday at our scheduled meeting.

Currently on 6 monthly infusions of Rituximab I was told by her that I would definitely have access to Anti Viral Treatments. Good! She said the information she has is that it’s a potential Game Changer. So I asked how do I get access if I am unfortunate to be infected with Covid? She told me if I have symptoms and have had a positive PCR to ring her Secretary during normal office hours and they will process, otherwise ring 111 and they should have my details regarding my vulnerability process who will process.

It sounds a bit clunky to me. Things to take into consideration for me personally are: My GP practice is hopeless (see previous post about 3rd jab) and my Consultant is a Renal Consultant (does have many patients who are CEV.

I am very careful and don’t intend to get Covid but wouldn’t be comforting to know exactly what to do. It all sounds a bit hit and miss to me, especially as I don’t have a lot of confidence in the NHS database after the failure to include CEV people initially.

Can anyone throw any more light on this?

[Main1234]

I agree it sounds very hit and miss especially over the Christmas period and Bank holidays. Not sure if you can even order a pcr to keep to speed things up. We are in the same situation as you and I just want to get a plan together to be prepared.

Guess it’s 111 and see. Not holding my breath tbh.

Happy Christmas to you and a safe and well New Year.

[Investigator1 in reply to Main1234]

That’s it, knowing what to do reduces a lot of anxiety. A ex work colleague of mine called me Thursday to tell me the ordeal she had (this has nothing to do with ant viral drugs) after her husband had contracted Covid. Apparently he was getting quite poorly had a rapid flow which showed positive she rang 111 and was told they couldn’t get involved until he had tested positive via a PCR, they got him into a test centre a few miles away, again testing positive only to be told by 111 that they needed to speak to him. It’s obviously a one off situation but it just shows how inconsistent the system is. Fortunately he was admitted to hospital and is doing really well. I think you can buy PCR tests but with most of the ones you can buy the sample needs to be sent off. Merry Christmas to you. Its been really good to talk to you this past 12 months. Nick.

[Mooka]

A friend sent me this yesterday. It the PKD site but it applies to all vulnerable people. pkdcharity.org.uk/news-even... a letter will be dropping through our letter boxes any day soon.

[Main1234 in reply to Mooka]

Thank you that’s really helpful, but not holding my breath re letter. I think I will try and order a pcr and say a “health professional “ advised it and keep it in the cupboard.

[Main1234 in reply to Mooka]

I’ve just ordered a pcr and stated a health professional advised me .. we will wait and see the outcome .

[Mooka]

I’m certainly not holding my breath waiting for a letter. They’ve emailed us before so why not email this. Please let us know how you get on with the PCR.

[Main1234 in reply to Mooka]

Don’t see why it won’t arrive and if contacted I’m going to say we were advised to get it over holiday period as OH is severely immune compromised and has no Covid antibodies.. which is all true. Sometimes I think you have to make it work for you in these uncertain times.

[Galaxy2]

Thanks Nick for highlighting this.

Certainly has made me think about what to do in the dreaded event of having covid. As careful as I am (and hardly going anywhere now) but with a teenager both at college and in a job where she is mixing with so many young people I do feel incredibly vulnerable.

I did actually order an PCR test to keep as reassurance if I ever needed one for me or my daughter ( as I certainly don't want to be driving her to a test centre) but got continual requests to return it so phoned 119 to explain my reasoning, I was told that unless I did the test and sent it in I would get contacted until I did return it, I did explain a waste of my time and theirs really but there you go. Maybe they would have given up after a while.

Lets all hope we can all avoid being in that situation.

[Investigator1 in reply to Galaxy2]

Hello again Jenny, I know exactly what you mean. It’s not really in our control to a greater extent because I am convinced if we do what we have been doing as a CEV community it will be pretty bad luck but let’s not tempt fate. I believe that come the middle of February if we continue with the rollout the picture will look a bit brighter. I think every day our situation is improving regarding edging our odds of recovery/immunity. Let’s face it we have to look after each other because apart from the NHS very little care or thought is given to us sadly by others who break / flaunt the rules. Let’s go forward together into 2022. Nick

[Main1234]

Interestingly someone on the vasculitis face book page has received a letter stating new treatments and that a pcr will be sent to have at home . The letter sets out what will happen if you test positive and who to contact etc. some progress I think .

[amms43]

I too have been on Rituximab for some time. This afternoon I received an email from NHS informing me that I will be sent a PCR test to keep by me which I should take immediately if I have any symptoms and instructions for how to inform them if I have a positive test. They tell me that in that event I would receive a call to discuss it with a doctor followed by immediate delivery of whatever treatment is decided upon.It seems very efficient and quite a relief! I hope you are all helped in the same way too.

Happy Christmas.

[Main1234 in reply to amms43]

Does sound more reassuring. We seem to be in a better place than last year despite not having antibodies. Happy Christmas to you as well . Let’s hope is a safe well one

[May7]

This afternoon (Monday 20th) I have just received the official email from Covid Treatments detailing the PCR Test info mentioned by Main a few days ago. I imagine that the rest of you will/will have received this too. We will be sent a PCR Test Kit by 10th January the latest with instructions as to what to do. It's about bloomin' time they remembered us!

[Main1234 in reply to May7]

Better late than never but the middle of January is a long time to wait for a pcr kit. Thanks for sharing and update, we all need to look out for each other .

[May7 in reply to Main1234]

I thought so too, but they say to Call 119 for advice, selecting the option for Test & Trace if we have symptoms before then. Let's hope we don't need it, but I do find this info reassuring. In the meantime have a safe and peaceful Christmas everybody. Love to all, May.

[Investigator1]

Well done everybody. I too have an email today. One step at a time, this is encouraging for us who have had notifications, for those of us if have not had anything, stay calm and wait a day or so. It looks like they might have done something positive but we remain a bit sceptical which is ok for now . I am sure more information will start coming through. It’s important we really keep a tight reign on what we are doing until we know more. Don’t take any risks wherever possible and stay safe. The future is looking a bit brighter. Dig in!

[Investigator1]

Hi Guys just to let you all know my PCR test arrived via the postman about an hour ago. Hope you all have the same prompt service. Nick

[Main1234 in reply to Investigator1]

Let’s hope it gathers dust!! Thanks for update. We have received the e mail and have the pcr I previously ordered. At last we seem to have some control.

[Hidden]

No mention of monoclonal antibodies or PCRs in very latest CEV letter from Scottish CMO - arrived today. Just get your 3rd vaccine and booster and hide if you can. If you can’t then free lateral flow kits are available online and if you have to go to work (as I do) then test daily and may the force be with you. Oh and there are some links for mental health - maybe needed to get through coming weeks with young family at home.

Phoned rheumatolgy Helpdesk to ask and they hadn’t heard about any of this at all. Monoclonal antibodies all being saved for ICU Covid patients here I’m told.

[Main1234 in reply to Hidden]

Sorry to hear this news from Scotland, hopefully they will change their minds very soon.

[Hidden in reply to Main1234]

Thanks. It's so deflating to get such a meaningless letter after reading comments here and after so long. It was even more depressing to learn that rheumatology were unaware that we are eligible for monoclonal antibodies and I know from a friend that some rheumatology patients are unable to get their treatments due to these being ring-fenced by ICU here for Covid patients. I'm really hoping that Scottish rheumatologists will have enough clout alongside solid organ transplant and other CEV specialists to get Dr Gregor Smith to see sense soon. Fingers crossed for us all. X

[citygirl1234]

Hi, I got the same email saying I would be posted a PCR to keep on hand and that I would likely qualify for one of the additional treatments. I have GPA and am immunosuppressed (long term pred + methotrexate). Unfortunately I had contact with a relative early this week who tested positive the following day. I have been testing negative on lateral flow since but not feeling well so got a PCR yesterday and got a positive result today. Per the email I received before I got Covid, the NHS is supposed to be calling me within 24 hours to discuss treatments following me receiving a positive PCR. If I haven’t heard from them by EOD tomorrow, I’m supposed to call 111.

I’m not at home (visiting relatives for Christmas) so not 100% on where things go from here but we will see. If I find anything out I’ll try and remember to update the group.

Merry Christmas!

[citygirl1234 in reply to citygirl1234]

Update on how this worked in practice for me as I’m now feeling a bit better:

A doctor from UCLH’s Covid Medicines Delivery Unit called me about 14 hours after I received the positive PCR result asking how I was and if I had symptoms etc. They said they would offer me molnupiravir if I was still in London, but as I’m not, referred me to the local CMDU where I’m staying. I then got a triage phone call from the doctor there, who after a bit of a kerfuffle over getting access to my notes, offered me a sotrovimab infusion which I had this afternoon at one of the local hospitals. They also took a set of bloods which will include antibody testing. Was a bit of a strange experience, but I am feeling quite a lot better and my fever seems to have gone away. Not cured, obviously but it does seem to have done something. Apparently I am going to get follow up calls for at least 14 days from the local doctor. All going well, I should be free to go back to London in the new year.

I’m glad this seems to have gone relatively smoothly, I was a bit worried they might forget to call because of it being Christmas.

FYI Lupus UK has put together some very informative details on how the new Covid treatment set up works across the UK (including details for England, Scotland and Wales, NI has not announced details yet) which my vasculitis specialist recommended: lupusuk.org.uk/covid-19-tre...

[May7]

Thanks for the update, and hope all goes well with your treatment. May.

[DazVin]

Unfortunately I have tested positive for Covid on 27/12 after starting to feel ill Christmas day evening! did 2 lateral flows boxing day and booked PCR online for the following day - this came back positive in the early hours of 27/12. All a bit hit and miss trying to speak to anyone as it has been the holiday period etc (unless its the track and trace lol), had a call back from one of the nurses that I left a message for but she gave me another number to call! Then spoke to one of the nurses running a study that I am part of for the effects ts of the vaccine and Covid for those of us on Rituximab - she advised me to apply online for the PANORAMIC trial of the antiviral treatment "Molnupiravir". Unfortunately they said NO but want me to keep an online diary.