Hi everyone,
COVID-19 treatments are now available through the NHS for those who are considered at highest risk of severe disease when they have a positive PCR test.
You can learn more about this at lupusuk.org.uk/covid-19-tre...
We're still clarifying some of the details, including exact eligibility criteria, but I am happy to try and answer any questions you may have.
So pleased and grateful to hear this. Thank you Paul.
I received a text from the NHS a couple of days ago. Not sure if they follow it up with a letter. Thank you Paul. Merry Christmas
Sorry, brain fog....I received an email so I wonder if that is followed up by en email? Thank you Paul
Hi loopy-lou . The information that I have seen indicates that eligible individuals will be contacted by email, letter or text. It doesn't suggest that a letter will be sent to everyone - some may only be informed by electronic communications. If you are eligible, you should get a PCR test with instructions in the post though.
Many thanks Paul. I have now received a PCR test through the post.
I received email a couple of days ago and today received my pcr kit through the post.
Many thanks for this information Paul. I have a question about Boosters following the 3rd primary vaccine. Does anyone know if we have to wait 3 months before receiving the booster? NHS have contacted me to say I can now receive the booster although it is not 3 months since 3rd dose. Am wondering if it is a mistake! Many thanks
Hi Loopyru ,
Yes, you need to wait three months after your third dose before you can have the booster. The automated systems are not all that reliable for inviting people - they have probably invited you based on age, rather than anything else. I think I've had four invitations for a booster after having it already too.
PaulOur booster programme is being rolled out quicker than that. You can get a booster 13 weeks after your last jab. I have now had mine at just over 13 weeks.
Best wishes
Wendy
Good news from here in the US yesterday. The very effective Pfizer anti-viral got emergency FDA approval. The UK added 2.5 million doses to their original order pending approval.
Some experts refer to this drug as a « game changer. »
So more treatments for the most vulnerable, many of whom are here on this forum!
Kay
I was made aware of this by a friend who had received the letter and did some research as I believe I meet the criteria but have not been contacted. I am extremely clinically vulnerable as I have had a Splenectomy, have S.L.E.; Sjogrens Syndrome: Chronic I.T.P. and M.G.U.S. although my S.L.E. is controlled with Hydroxychloroquine and currently stable. I contacted my GP who didn't know anything about this but did say she would look into it and get back to me. She didn't think GP surgeries had been contacted to provide information regarding eligibility. I am really concerned, can you advise. Thanks.
Hi all,
I don’t have lupus but my vasculitis specialist is also a lupus specialist and he recommended the Covid 19 information provided by Lupus UK, as it is very thorough and informative. I’m glad he did, as this information proved to be really useful to me this Christmas and I’ve always found this community to be very supportive regardless of diagnosis so would like to return the favour. Apologies in advance this is a fairly long post but I’m sharing the detail in the hopes that it may help at least one of you. I was lucky / unlucky enough to try this new system out over Christmas as I have COVID-19. I know lots of people have have had reservations about how it might work in practice (myself included) so here goes:
I haven’t had the best of luck this Christmas - I went to stay with relatives and attended a family funeral, during which one of my cousins unwittingly gave me (and most of the family) Covid 19 👀. The funeral was masked up and we all said we had taken lateral flow tests which were negative but it seems someone may have been telling porkies (as was allegedly let slip by a relative later). Anyway, following morning (22nd), lo and behold they do a lateral flow test and they’re positive and so are several other relatives. I started getting headaches, dizzy spells and worse fatigue than usual the same day but wrote it off as my vasculitis and not drinking enough water. LFT negative, and continues to be negative the following day, where I also got a v sore and hoarse throat and was sneezing a lot. Then on Christmas Eve morning I woke up after night sweats, tested negative on LFT again and bit the bullet and got a PCR test from a testing centre (as did the 3 relatives I am staying with). I also started wheezing and was feeling pretty wiped out.
As 2/4 of us were feeling unwell and we were all waiting for PCR results we decided not to bother with Christmas dinner on the 25th. I had also gained a fever and hot and cold flushes by this point and was moderately unwell. My PCR result came back positive for Covid 19 at 6 pm. At about midnight I got an email from the NHS (and then a text) saying someone would call me within 24 hours to assess my eligibility for the new treatments. (I had had the email before saying if I tested positive, I may qualify etc). By this point I was chesty enough that I could only sleep on my front for about 45 minutes at a time.
I got worse overnight (would compare to flu) and checked Lupus UK’s information to find out what to expect. I had a phone call at lunchtime from one of the doctor’s at UCLH’s CMDU asking how I was and if I had symptoms etc to check my suitability for treatments. He was very nice and said he would offer me molnupiravir (a retroviral drug in tablet form) which had I been at my house in London, would have been couriered to my house. As I am not there, he referred me to the local team here (after it took me 15 minutes to remember the postcode because of Covid brain fog 🙈). It also took me 5 minutes to remember my DOB! 🙈
The local CMDU then called me a few hours afterwards - first call was from management to say they had the referral and that a doctor would call me to see if I was suitable for treatment. As I was out of area, there seemed to be some kind of paperwork issue (probably funding related) but they would try and push it through and sort it out afterwards.
Then about an hour later a doctor from the local CMDU called. She said I’d missed the cut off for triage and treatment that day but would put me on the list for the following day and that she’d call the following day for the triage. Apparently their cut off was 3 pm, this may vary at other units.
I then got a phone call this morning to go through triage and after a bit of a kerfuffle over getting access to my notes, I was offered a sotrovimab infusion. I had this this afternoon at one of the local hospitals. They also took a set of bloods which will include antibody testing. It 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, and I’m feeling generally much more “with it”. Apparently I am also 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 if I can kick this to the kerb.
If you have the biological infusion treatment, like I did, they will also test your bloods for antibodies while you are there (and presumably use this to help review the situation afterwards if you are not improving afterwards). The nurses said they are being assessed on time from positive PCR to referral to the CDMU (24h target) and time from assessment / triage by the CDMU to treatment (24h target). The recovery times and bloods etc are also being fed into research/reporting (to hopefully confirm that this is a great and cost effective idea as it prevents people from having complications or going to hospital). I have no idea what antibody response I have had to the vaccination (was immunosuppressed via pred + MTX at the time of all 3) but I hope I will find out soon.
TLDR: the system has worked well for me so far. I tested positive and was contacted and given treatment 👍
Here are also a few tips based on my experience:
☑️ If you don’t use the posted PCR, the most important thing to do is to make sure you enter your NHS number when booking your PCR test. This is because it’s the NHS number they are using to flag you as high risk / priority in the system for the new treatments. A relative who has a different high risk condition was not initially picked up because of this so sharing in case it helps someone else. They were able to get assessed for the new treatments via a 111 referral to the CDMU in the end but it was a faff. CDMU = the Covid Medicines Delivery Unit aka the people assessing eligibility for the treatments and giving them.
☑️ If you haven’t already got one, get a CE marked oximeter and / or thermometer because you will be asked by the triage doctor if you have taken your temperature and know your oxygen levels. You can get these from a chemist / pharmacy or online
☑️ Ask someone you live or are staying with to do the contact tracing form for you. I found this physically painful to complete as the thinking was making my head hurt and it took 1.5 hours to complete but completing the form is a necessary evil to protect others who may have been exposed
☑️ If you happen to be staying somewhere else when you test positive, ask “your” CMDU team to refer you to the local one when they call, it should save you having to go through 111 or your GP surgery. Be prepared there may be a degree of faff related to you not being at home. (If you get stuck, you can try directing them to your specialist. I would have tried this but got a voicemail when I called yesterday).
☑️ Make a list of your symptoms each day, including any you had before you tested positive that in hindsight were probably COVID. You will be asked when your symptoms started and how they progressed
One final anecdote before I stop rambling:
A relative of mine is also CEV to Covid-19 and immunosuppressed but did not receive the letter or email saying they may be eligible for new treatments. They also tested positive for Covid-19 on a PCR test, but did not receive the follow up email and text that I got (saying the NHS will be in touch within 24 hours). As they knew they should qualify for assessment, they rang 111, who referred them to the CDMU and they have also now had sotrovimab treatment. They also had a faff with 111 getting them to link their PCR result to their high risk status via their NHS number as mentioned above. Apparently their area’s letters are stuck in the Christmas post backlog.
Disclaimer: this is based on my personal experience in England. Protocol may vary from area to area and I am not a qualified health care professional. If you are unwell you should seek guidance from a qualified health care professional
Thank you so much for sharing your experience citygirl 🤗 I didn't know what an oximeter is..but I do now n I intend to purchase one ASAP!! This will be beneficial for us all..I don't suppose you would be up to posting it on the forum so that everyone can read? Posting on this thread it's easily missed..n that's why I'm replying too..to bring your reply to this thread to the foreground.
Of course I totally understand if you're unable...you've been through the mill!! Gentle 🤗🤗🤗to u n I hope you have a speedy recovery and can return home. Thank you again 🙏🌈😽😽xx
Thanks Krazykat! 💚 😂 tbh it is a fancy name for what I always thought of as “the finger chippy thing”. Glad it helped. I’ve just put it on a dedicated post as well now so hopefully more people will see it. They didn’t keep me in, it’s an in and out job for the infusion. Was weird because it was in an outbuilding at the back of the hospital with all doors and windows open, with two staff in full PPE and you in a mask. You have to sit in a car and wait for them to collect you and take you in, making sure not to touch anything. Very surreal! Glad to have it though as I really felt the difference and am on the mend now xx
My one and a half year old nephew thought his pulse oximeter was a toy. I have a very funny video of him in the hospital. Fortunately, he left in good health.
😘😘Kay
Thanks for this. Received my Pcr pack yesterday, or rather the postman practically threw it at me! Haha. Initially didn’t know what/why I’d got one. If anyone hasn’t heard anything, check your spam/junk email folder. My email was there x
hi, Paul, I havent received my letter/email or any PCR tests, yet I had every letter from Gov before and shielded for 20 months. I have rang GP, who told me its nothing to do with them and to ring 119. Also done this and there isnt an option number to click for this query. I am really anxious now as to what to do, can you help me please, grateful thanks
Hi Poshcards ,
You're not alone. This afternoon I will be digesting some information sent to me over the Christmas holidays to see whether we have any further guidance about the eligibility criteria and recommendations for people who did not receive letters.
The advice I was previously given is that, if you think you are eligible but didn't get a letter, you should speak to your GP or consultant who can assess this and arrange for a letter to be issued. I'm sorry that your GP has suggested they have nothing to do with this - I'm going to look into that because I was under the impression they'd be briefed with instructions for referral. Does your rheumatology department have a helpline that you could try?
Hi, I could try emailing my consultants secretary, this is just one more thing to be worrying about with covid that we dont need, I know I am eligible as I am on Methotrexate 25mg injectios, asthmatic etc etc
Hi Poshcards . If you're able, try emailing them and let us know how you get on. I appreciate that this is just one more thing that you're having to take extra responsibility for though.
I'm in talks with colleagues in RAIRDA to understand the magnitude of the problem and what we can do to help resolve it.
Hi, again Paul, so I have emailed my rheumy consultant 9 days ago and not had any reply at all. So now I am beside myself with worry over this government letter etc as I do not have direct access to the anti viral drugs. I am CEV and on 25gms methotrexate, I inject myself besides Lupus I have both arthritis' , I have asthma and so on, so I do qualify for this, I shielded for 22 months by order of government eg Matt Hancock and have all the letters etc, so what on earth do I do now!!
Hi Poshcards ,
Please don't worry too much. If you were to suspect you had COVID-19 you can still have a PCR test, although admittedly it is less convenient not having one at home already. If you did have a positive PCR, you can be referred to a COVID-19 Medicines Delivery Unit (CMDU) by your GP and they will assess whether the COVID-19 treatments are suitable for you.
RAIRDA is seeking information and guidance for those people who are eligible and haven't received a letter and PCR test. When we have more, we will share it.
Hi, thanks Paul, I will carry on staying away from people. X
Hi, Paul, grateful thanks for your efforts. I will try on Monday as my consultants secretary is part time
Hi Paul, I'm a little confused. I have Lupus Nephritis class 5, so immunocompromised rather than immuno supressed - I take only hydroxychloroquine and losartan. I am classified as CEV and have all the letters to prove it! However, I have not received the government letter or PCR to say I would be eligible for antivirals if I were to contract Covid. The advice from Lupus UK seems to indicate that those with renal disease would be eligible, whereas the advice sent to me from Addenbrooke's, when I requested it, seemed to indicate that I was not. Can you clarify? Thanks
Hi Neriah ,
Yes, as someone with class 5 chronic kidney disease you should have received a letter and a PCR test. This is clearly stated as one of the eligible groups on the NHS website - nhs.uk/conditions/coronavir...
When did you speak to Addenbrooke's? It might be worth checking with them again and referring them towards the NHS page?
Those on immunosuppresants and Covid 19 vaccine
The new treatments at home for CEV with Covid (UK) - information for GPs.
Share your experiences of the COVID-19 pandemic for online UK-based research studyPress Release: People with rare autoimmune rheumatic diseases at increased risk of death during COVID-19 pandemic.
Quick update for people newly getting letters about COVID-19 treatment eligibility
