Anyone immunosuppressed getting lfts

[MossyBottom]

I keep getting emails saying I've ordered lfts and I haven't. Had two boxes sent to me this week and now got another email saying more are on their way.

@dianthus101

I have never had one email from any NHS body for anything, apart from confirmation of my vaccination bookings. I wonder why they don't contact me this way?

I think they are only sending them to people who are eligible for covid treatments. If you are eligible maybe it's because they haven't got your email? They will probably send a letter too.

I've had a letter and been sent the priority PCR. I also got a letter telling me to get my third primary dose and subsequent booster. But I've never had an email about anything covid related or anything else from the NHS, including regarding my RA and its treatment. They have my email address so no Idea why not.

@TypicaIMe Just noticed that you are on methotrexate. Unless you are also on a biological or corticosteroids I don't think you are eligible for covid treatments.

I've had a letter and been sent the priority PCR. I also got a letter telling me to get my third primary dose and subsequent booster. But I've never had an email about anything covid related or anything else from the NHS, including regarding my RA and its treatment. They have my email address so no Idea why not.

Does your GP have your email. I think that will be the one registered with the NHS.

I'm on a biologic and have active inflammatory disease, and get no communications whatsoever about anything covid related, despite my GP, hospital, the NHS and the Dept for Health having all my contact details including email address. I check my junk folder regularly.

My DP, also under the local Rheumatology Dept for osteo, but is currently on no medication from them at all (and when he was it was only a NSAID) received the email about anti-virals. We were both a bit pissed off about that to be honest.

[quote Workinghardeveryday]@SpinningTheSeedsOfLove I am on the same meds and azathyoprine. No one has ever told me to test before injecting.

Have you been told to?[/quote]
Verbally, at an appointment. I think it was the biologics nurse. (Sorry, I see so many doctors, nurses and HCPs, I'd have to go back through my hoard of notes.)

@SpinningTheSeedsOfLove

I'm on a biologic and have active inflammatory disease, and get no communications whatsoever about anything covid related, despite my GP, hospital, the NHS and the Dept for Health having all my contact details including email address. I check my junk folder regularly.

My DP, also under the local Rheumatology Dept for osteo, but is currently on no medication from them at all (and when he was it was only a NSAID) received the email about anti-virals. We were both a bit pissed off about that to be honest.

Receiving an email about the antivirals doesn't mean your DH will definitely get them. The covid treatment units phone to check eligiblity if test positive. The email comes from NHS digital. I think they will get the data from your GP records rather than the hospital.

If you are on one of the treatments on this link I would phone your GP.

www.england.nhs.uk/coronavirus/documents/c1603-interim-clinical-commissioning-policy-antivirals-or-neutralising-monoclonal-antibodies-for-non-hospitalised-patients-with-covid-19-version-5/

Sorry that link is very long. The treatments are:

1. active/unstable disease on corticosteroids, cyclophosphamide, tacrolimus, cyclosporin or mycophenolate.

2. stable disease on either corticosteroids, cyclophosphamide, tacrolimus, cyclosporin or mycophenolate.

3. active/unstable disease including those on biological monotherapy and on combination biologicals with thiopurine or methotrexate

Thanks for your post, @dianthus101, it is kind of you to care. All of you

I have made multiple approaches to my GP including phoning reception and emailing the practice manager and the CCG. The practice manager got reception to ring me to say he'd reply soon, but he never did; and the CCG never replied to me either.

Reception however assured me that I am 'on the list', but I mysteriously receive no communications from anyone about anything covid-related so clearly I can't be.

The vaccines have been a bloody farce. It's like I don't exist. DP (at the same GP practice) (different surnames) OTOH gets a lot of communication.

We have tried and tried to unpick it but it doesn't make sense.

Anyway, I'm glad to get the LFTs! As pp said, that must be down to the number of vaccinations I've had and the dates I had them. (All arranged without any help whatsoever from my GP practice.)

And some days I'm just too tired and unwell to be arsed with it all.

@SpinningTheSeedsOfLove

Thanks for your post, *@dianthus101*, it is kind of you to care. All of you

I have made multiple approaches to my GP including phoning reception and emailing the practice manager and the CCG. The practice manager got reception to ring me to say he'd reply soon, but he never did; and the CCG never replied to me either.

Reception however assured me that I am 'on the list', but I mysteriously receive no communications from anyone about anything covid-related so clearly I can't be.

The vaccines have been a bloody farce. It's like I don't exist. DP (at the same GP practice) (different surnames) OTOH gets a lot of communication.

We have tried and tried to unpick it but it doesn't make sense.

Anyway, I'm glad to get the LFTs! As pp said, that must be down to the number of vaccinations I've had and the dates I had them. (All arranged without any help whatsoever from my GP practice.)

And some days I'm just too tired and unwell to be arsed with it all.

I am really sorry that it has been so difficult. If your practice say you are definitely on the list the GP will be able to refer you to the COVID treatment unit if you do test positive.

www.england.nhs.uk/coronavirus/publication/covid-medicine-delivery-unit-directory/

@dianthus101

@TypicaIMe Just noticed that you are on methotrexate. Unless you are also on a biological or corticosteroids I don't think you are eligible for covid treatments.

At the moment I'm having steroid injections every three or four months because my disease is pretty active. I've had three since August and I can have another soon if I need it, but after that I have to give them a rest due to potential side effects.

I'm also on other medication for a neurological condition, I'm not sure whether that counts too. Either way I got a letter from the NHS saying I was eligible but my rheumatologist said not, because the rules had recently changed.

I don't think steroid injections count though as they don't stop the covid vaccine from working. The letter only states that people may be eligible. Whether or not they definitely are is decided by the the covid medicine treatment unit when they contact you if you test positive. The rules on who is eligible haven't changed since covid treatments started to be used in December. Perhaps your treatment has changed though?

@dianthus101

I don't think steroid injections count though as they don't stop the covid vaccine from working. The letter only states that people may be eligible. Whether or not they definitely are is decided by the the covid medicine treatment unit when they contact you if you test positive. The rules on who is eligible haven't changed since covid treatments started to be used in December. Perhaps your treatment has changed though?

Nope, my current treatment began last summer (although I was diagnosed 11 years ago and have been on various treatments over the years).

The steroid injections do affect the vaccines, according to my consultant and the nurses at the vaccination centre. My consultant is also the person who told me the rules had changed a few weeks ago.

All that said, there does seem to be a lack of agreement when it comes to these things. When I went for my third primary dose the nurse told me not to take my methotrexate for two or three weeks to allow for a good immune response. My consultant was horrified by this and told me it was completely inaccurate, but lots of patients had been told the same when they went for their vaccinations.