Access to antiviral infusion: Hello, I tested positive... - NRAS

NRAS

34,432 members42,810 posts

Access to antiviral infusion

pino99 profile image
23 Replies

Hello,

I tested positive for covid yesterday (second time round). I logged my LFT result on the NHS and took and sent of my emergency PCR. The advice says someone would contact me (I am CEV) within 24 hours to arrange an antiviral infusion, but I have heard nothing. I have recently had two infusions of Rituximab (last one two weeks ago) so I'm a bit worried about my lack of immunity. Has anyone accessed the antivirals in the Exeter/Devon area and if so how did you go about it?

Thanks,

Pino

23 Replies
weathervane profile image
weathervane

Im in NI , my friend CEV daughter tested positive and she contacted her gp who contacted her consultant and it was organised that way . I would try your consultants secretary or contact your gp as i think the optimum period is 72 hours . She had the infusion and it was very successful, best wishes.

pino99 profile image
pino99 in reply to weathervane

That's very helpful, thanks for your reply

AgedCrone profile image
AgedCrone

Having just had Rtx infusions you should really try to speak to your rheumatologist. If that is not possible you could call the clinic where you have your infusions because those nurses are very clued up on what one should have so close to having had a Rtx infusion……. In fact they would be able to contact your Rheumatologist more easily as well so I’d try both if I were you.However…once you do hear from theCMDU….there are specialists there who will advise you.

Good luck….hope you continue to feel well.

pino99 profile image
pino99 in reply to AgedCrone

Thanks for the advice. I phoned the rheumatology nurses line yesterday and left a message, so hoping to hear from them today. Just very conscious it is Friday and if they don't get to me today then that's it until Monday. I think I'll try my GP now as it is over 24 hours since I reported my positive.

AgedCrone profile image
AgedCrone in reply to pino99

Try 119…they have people they can put you on to who can help you ,I have just looked at an article on Medicine Matters Rheumatology.There is an article Rtx & Covid19 vaccination:Timing may be a key for antibody response…might me worth a read?

pino99 profile image
pino99 in reply to AgedCrone

I've spoken to the referral service and they are trying to sort it out for me via my gp, so hopefully will hear from someone in the next few hours. Thanks for the article, very helpful as I need to decide when to get my fourth vaccination after my infusion.

weathervane profile image
weathervane in reply to pino99

Hi pino , i had last rituximab 2 weeks ago , the nurse advised me that i need to wait 6-8 weeks before getting 4th vaccination, i don’t know if that will change though because you have covid. Get well soon xx

pino99 profile image
pino99 in reply to weathervane

Thanks weathervane, that's very helpful

Maureengibson profile image
Maureengibson

Advice is to contact gp or 111 and request urgent referral to your local CMDU unit. I wouldn’t worry about the weekend 111 can handle it and most CMDU units are open every day.

pino99 profile image
pino99 in reply to Maureengibson

Thanks. My practice claim they are not involved and I've spoken to the referral service who are now going to email my gp to tell them how to refer me. Fingers crossed we get somewhere in the next few hours.

AgedCrone profile image
AgedCrone in reply to pino99

I had the most traumatic up-and-downer with my GP practice who insisted that contacting the CMDU you was nothing to do with them.Even after I copied them the letter from NHS England to all GPs they would not budge.

You can in fact get the phone no of the CMDU from your local hospital…..so if you don’t hear.,,give them a call.

I do wonder why it is GPs refuse to do as they have been asked?

I wonder if they thought they were going to get 1000 phone calls a day?

As it’s turning out they may be getting a few calls day …..so they know full well it wouldn’t be an onerous duty to make a few phone calls.

I just don’t understand how 119 still tell you to ask the GP & the GP tells you it’s 119 …….. this has been going on for months and nobody from the NHS appears to be taking it seriously.

My GP was really flippant saying “ Sorry you are getting the runaround but antivirals are nothing to do with us”.

Luckily all conversations were by email and I have printed them.

pino99 profile image
pino99 in reply to AgedCrone

How frustrating for you. It seems they feel that saying 'we are not involved with that' leaves them off the hook. The receptionist claimed to know nothing about it and put me on hold for a bit to go and ask, so they cannot be getting that many calls. I'll wait for a bit and then try to get the CMDU number as you suggest.

AgedCrone profile image
AgedCrone in reply to pino99

Why don’t you just phone your local hospital and explain your position they might be able to help you straight away putting you through to the CMDU.

AgedCrone profile image
AgedCrone in reply to Maureengibson

You might be interested in the article in Medicine Matters Rheumatology on two studies re timings for jabs after Rtx infusionsIt confirms what my rheumy told me about waiting after my Rtx infusion.

I have been tested & have no antibodies…hence I am waiting until at least May/June after having had an infusion in January before it’s decided whether I have the 4th jab.

But of course that advice was for me…& not about the antiviral treatment if I tested positive…….

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

I waited 23 weeks from the prior Rtx before I had my first Pfizer in early February 2021 and a week off 6 months was not enough as I had zero antibodies. I knew deep down as I repopulate B cells slowly so it was hopeful as I’m usually 9-10 months in them returning. I did a B cell blood test just before the vaccine but hospital didn’t process it properly and the result got lost so I got scuppered there too. 🤨

HamHammy profile image
HamHammy

I would try the general nhs covid telephone number if you are not getting anywhere with 111

WillowsMother profile image
WillowsMother

My Rheumatology Nurse gave me the following email address and said I should use it to contact the CMDU directly as soon as I get a positive test:kmccg.cmdusupport@nhs.net

Fortunately I've not had to use it myself, but you should get the help you need with getting anti virals if you've not managed to already!

pino99 profile image
pino99 in reply to WillowsMother

Thanks, that's so kind. I finally phoned 111 early this morning after being ignored by both GP and rheumatology. 111 have been very good and got Devon Doctors to ring me within the hour. I've now been referred to the local CMDU, they phoned me about an hour ago to say they are very busy and will get back to me as soon as they can. They said it was a 'comfort call'. Given the message and that this is time critical, I don't feel particularly comforted and I told them so! We'll see if they get to me within the window of opportunity 🙄

WillowsMother profile image
WillowsMother in reply to pino99

Hopefully they'll get back to you! If not, try emailing with the word "urgent" in the subject field. There's a short window of opportunity to have anti-virals so they need help/info from you to make your case a bit more of a priority! Fingers crossed for you.

GinnyE profile image
GinnyE

Dial 111 or even ring up your local CDUM, probably based at your nearest large hospital. For Information:

I just phoned the main switch board of the Royal Hallamshire Hospital in Sheffield and asked to be put through to the CDUM. Man answered. He said it's supposed to come through your GP but acknowledged some GPs dont/wont do it.

I haven't got Covid but wanted to know how I stood if I got it. He asked what meds and conditions I have. Because I only take methotrexate and not had steroids in last year and nothing else I dont qualify for anti viral treatment. He said alot of the people they see have particular illnesses like blood cancers. But certain drugs stop antibody response and so would get help. Age not really a factor he said. I told him about me private antibody test results and he thought them good, probably better than his!! Aldo mentioned seeing evidence that some RA immune suppressing drugs help treat Covid if you catch it.

Thought I'd just post for info. Keep well all.

pino99 profile image
pino99 in reply to GinnyE

Thanks, I probably should have done that yesterday but was trusting my GP and rheumatology team. I have now been referred by 111 and waiting to get a call from the CMDU as they are very busy.

GinnyE profile image
GinnyE in reply to pino99

Good

pino99 profile image
pino99

Just wanted to say thanks to you all for your answers and advice, much appreciated. I have an appointment at 9.00 tomorrow morning to have the antiviral infusion, so success in the end!

You may also like...