Antivirals pcr test

[trace58]

After two years of being told CEV recieved all NHS letters and givernment letters saying due to RA Methotrexate 22.5mg Immunecompromised and co morbidities, Rheumi can't sayuf vaccine worked etc told today because I am not on biologics and stetoids I don't get the priority Pcr with antivirals so still very anxious to do normal things ! anyone else had this problem

[GinnyE]

Just spoke to my ra nurse and she said she thinks I should qualify for antivirals and will check with doctor and then can trigger the process. I take 20 mg methotrexate.

[dgordon in reply to GinnyE]

I am on 20 mg methotrexate and didn’t qualify for the antivirals when I recently had covid. This was because I didn’t also take steroids and hadn’t been recently in hospital due to a flare up.

[GinnyE in reply to dgordon]

Maybe I wont then after all. Sounds like you survived anyway??

[dgordon in reply to GinnyE]

Lol, I survived but it wiped me out and it's that not knowing if you're going to be OK or not.

My GP referred me but then the hospital consult with you to deem whether you are eligible or not. The consultant I spoke to said "well the good news is you aren't the highest risk" ..... let's hope so I thought.

I've been so careful for the past 2 years but I work in a school so it was inevitable I would catch covid. Having had a sister nearly die from it you can't help but feel scared.

[GinnyE in reply to dgordon]

Absolutely. How awful to see your sister so ill. I'm glad you're ok but it all sounds like a bit of a gamble doesn't it?

[3LittleBirds2]

Hi Trace,

Lots of us in the same boat and there's been a lot of posts and debates about it recently, including one from Alanah recently.

All we can do is manage our own risks and keep ourselves safe as we can and hopefully there will be developments for people where the vaccines may have not have worked so well soon.

[Karen12]

This is the inclusion criteria I believe

Inclusion criteria

[Hezekiah in reply to Karen12]

Karen, can you maybe supply a link to these criteria? Many thanks

[Karen12 in reply to Hezekiah]

It wouldn’t actually let me do a link to that specific one (from work) but the criteria for RA et al is also on the NRAS website

nras.org.uk/resource/faqs-n...

[Hezekiah in reply to Karen12]

Thanks Karen. I think this must be the link therefore england.nhs.uk/coronavirus/...

[aliplayspiano in reply to Karen12]

Yes this is the one I saw. I received all the shielding letters etc but haven’t heard anything about priority pcr/anti virals. But I saw this list somewhere so assume that because I’m just on tocilizumab and my RA is well controlled I don’t qualify. It’s all quite confusing though!

[Vickie100]

Yep told exactly the same.Just to let them know should I test positive and become really ill. I fear it may to late at that stage.

[Runrig01]

The Octave study found that those on lower doses of methotrexate mounted a good response to the vaccine. I’m on 25mg MTX, benepali, prednisolone and hydrocortisone as well as 2 steroid inhalers, and when I tested my antibodies after the second vaccine, I’d mounted a strong response consistent with having both vaccines. So it’s not a given that you’ve not produced antibodies. I do feel everyone should be offered antibody checks, so they can make informed decisions. I purchased mine online, and it has given me some reassurance. However I have serious lung issues as well, with areas of collapsed lung from no chest expansion due to fused ribs as well as damage from aspirating acid, which has scarred my lungs, as well as asthma. So I will continue to be careful, I pretty much set my own rules rather than listen to government. I listen more to the scientists and Prof Tim Spector of the Zoe app. If you are anxious it may be worth checking your levels. However the octave study found that those on low methotrexate did have good levels as long as they took their booster when offered, they should be protected from serious illness or death. Hope this may reassure you a bit, Stay safe 🤗

[trace58]

thank you that helps , its co morbidities worries me , Nras web the doctors seemed to think Methotrexate and co morbidities you should get antivirals? I was told that over 15.g of Methotrexate was quite a high dose ! I will get a antibody test was told that the tests done by chemists doesn't really give full results, though. the NHS workers get tests done rightly so but you would think they would open to Immunesurpressed

[kittypebbles]

Yes, it is a worry. I think a lot of folks who could potentially become seriously ill have been left out. I've had chest infections/pleurisy that have led to pneumonia requiring hospital admission several times but not on list. I declined biologics etc for my RA as I have asthma, COPD and scarring of lungs and each time I tried anything more than the older DMARD medications my immune system was badly affected. As a result I have never stopped sheilding and will not meet anyone indoors at all. Maybe eventually those of us on the original sheilding list will be included for anti virals etc. Until then we will have to be extra careful. XX

[Joanneforbes]

It’s all very confusing! I too was on CEV list I’m on 17.5 methotrexate sulfasalazine x6 But I’ve had a letter told need 4th dose covid vaccine plus have a pcr in case get covid then these anti viral medication!!

I’m only guessing it maybe because I was on steroids around time of vaccine??

It came from my hospital Rheumotology dept …

[Briefencounter in reply to Joanneforbes]

That's very reassuring , Joanne . I'm on 20 mg Methotrexate plus 6 x Sulfasalazine . I'm on the CEV list and have had 2 AZ jabs + 1Pfizer and 1/2 Moderna ( suggested by my rheumatologist).But it has not been suggested that I'm eligible for the rapid PCR + antivirals .

Have you actually received the rapid test + access to AV ? I ask because I've just read a case where someone was told by their rheumatologist that she should get the priority pack but when she applied she was asked so many questions that she was unable to answer , then finally told that she didn't actually qualify . Other anecdotal cases of people not on the CEV list being sent the priority pack without being asked . Such a minefield . Keep safe and well .

[Joanneforbes in reply to Briefencounter]

Yes I had a letter to go on line order one or call 119 ask for one You have to say that you’ve been asked by your Dr to get one I’d get one just in case

This is part of what you need to do

[Briefencounter in reply to Joanneforbes]

Thank you , Joanne, that was very useful .

[aliplayspiano in reply to Briefencounter]

Yes I am on the CEV list as on biologics and was told I was eligible for third primary dose of vaccine. I've since had my 4th dose. I haven't been told I was eligible for the rapid PCR and antivirals either. I don't know if its because my RA is well controlled though that comes at the price of having low neutrophils/white cell count.

[Briefencounter in reply to aliplayspiano]

Thanks . It really is a difficult area . I think a lot of people are now ringing 119 and being sent just a PCR test rather than a red priority kit . Then I guess if you get symptoms you can do a test and ring your doctor . It’s just the time limit that is difficult to judge , as I don’t think the antivirals work unless you’re in the very early stage of the disease.

[Deminem]

Hia,

I called 119 as I am also CEV on biologics and had other letters in the past but not the antivirals one.

Couldn't get a priority kit that triggers antivirals but got sent a just in case PCR via 119. Later my rheumy said I should tell them if I test positive and they will trigger the antiviral team to swoop into action, so she said, famous last words

[Briefencounter in reply to Deminem]

That seems to be the answer to a lot of us , CEV but not with qualifying disease level or medication . Better than nothing . I think I might try that route . Thanks .

[trace58]

It's a joke

[Briefencounter]

Yep - we seem to have to fight every step of the way . I know it’s a novel disease but we’ve had two years of it now and it’s worrying if you ring up the correct organisation and they don’t know what you’re talking about .

[Maggsie]

I've been on 20mg mtx for 8 years and Tocilizumab for 12 months (previously on rtx for 2 years). I have never received a shielding letter or text but I have had the 3rd primary. To be honest I've not chased anything up as it makes me so stressed to jump through the hoops and that makes my RA worse. So I'll wait and see.

[AgedCrone]

A lot are in the same position as you trace58….. I am…but I won’t worry until I get a positive PCR test….then I would call 111 to put me on to a CMDU…(Covid Medicine Delivery Unit) to get assessed for the antivirals.No good worrying about something that will probably never happen.

[Poshcards]

I inject 25mg Metho every week, had all previous letters, totally locked my self in house for 22 months on instruction and have not had the email from government, going round in circles with everyone except my rheumy today saying I must have access to the anti virals, gp has now been told to sort it basically!! we will see!

[vonniesims]

My GPs know nothing