Antivirals.

[ks1966]

Hello. Does anyone know which number do I call for the Covid antivirals and what is the procedure.

Thank you

[Bootoo]

119 will help you. Or ring your GP.

[KittyJ]

I spoke to my GP and they referred me

[bpeal1]

I called 111 and got a very quick response.

[Smudge-1]

My rheumy department has told me to go through them but I haven’t needed too test the system yet.

[Jillyanne in reply to Smudge-1]

I wouldn’t bother, rang mine and it took 3 days to get back to me, Best just ring GP 🤷‍♀️

[helenlw7]

I reported my lft on the NHS app and they took it from there, but that was in March, and I’m not sure if you can report positive results anymore.

[Flowersaregreat in reply to helenlw7]

I just double checked - yes we can register the NHS issued LFT as eligible for accessing treatments. It came up on Google the link (I just put in 'report positive lateral flow test') I had covid May/June despite being fully vaccinated and generally very careful. I had antivirals and then antibodies treatment at the hospital too, I got so unwell they wanted to admit me for oxygen around day 11 but I didn't want to, luckily breathing improved eventually. I felt really scared. By week five the covid symptoms had gone although caused RA flare which is still ongoing. I try to remember there's never been a better time to get covid as in 2020 we didn't have treatments, vaccines, knowledge whereas at least now we have lots of data and experience to draw from. I hope you are doing alright from your experience in March and recovery has been progressing from both the covid and any extra RA problems it brought with it

[helenlw7 in reply to Flowersaregreat]

My breathing improved after I’d had the infusion but when I went for it the wanted to admit me, but because the infusion wasn’t done at the local hospital where I go for my RA and chest, I was reluctant so they made me promise I’d phone for an ambulance if it got any worse! Prior to Covid id been tested for antibodies and had 4 vaccines! I’ve had another one since then. I was really cross when I got covid because I’d been shielding for 2 years and had just started venturing out!

[Jillyanne]

Hi, I rang my GP, she fills the form and Covid Medication team phone you .Good luck

[cathie]

It depends where you are. I’m in edinburgh and there’s a Lothian number to call

[Hidden]

I rang my GPs who were useless & just said all I needed to do was to isolate. I then rang the rheumatology clinic & within in hour I got a call from a doctor who prescribed antivirals to be collected from the hospital. The strange thing is that whilst I was taking the antivirals I felt better than I have done for years but as soon as they finished I felt as ill again. I am still in extreme pain now. Hope you soon feel better.

[Runrig01]

The system is still that if you log a positive nhs LFTs they will get in touch with you. The list of meds that give you eligibility was tightened up in May, with only Jak inhibitors or B cell depleting therapy. Tnf inhibitors are no longer included, as evidence has found they are not at significant risk of severe disease. Here’s the link to the full policy, footnote 8 discusses the biologics. Also MTX is no longer included unless it’s for interstitial lung disease. If you’ve not heard and meet the criteria either your gp or 111 can refer you.

gov.uk/government/publicati...

[wishbone in reply to Runrig01]

Hi Maureen, interesting report, thanks for posting. I'm not the best at deciphering these things, but am i correct in thinking the report states that interstitial lung disease can be treated with methotrexate? Also, and again if I'm reading it right, Think i need to find out more about that and the apparent increased risk of getting serious covid and related pulmonary thrombosis for people on JAK Inhibitors as i take Rinvoq. I also have interstital lung disease which adds to my concerns. I have a F2F appointment with rheumy in a month or so and think i need to discuss the above with my rheumatologist. I spoke with the rheumy nurse by phone this morning and explained my above situation. She knew nothing of the report's findings, no surprise there, and advised me to print the report and take it to the F2F appointment to show my rhematologist, which i shall do.

Not sure if i'm overeacting here so welcome you or anyone elses thoughts on the above?

[Runrig01 in reply to wishbone]

So when I was diagnosed with pulmonary fibrosis, my rheumatologist cited MTX as the potential cause and insisted I stop. I then had an urgent respiratory appointment, where the Consultant said that although they used to believe MTX caused PF, that more recent and more thorough research suggests it actually delays getting PF. So she insisted I continue on it. After 7 months she phoned to say my HRCT scan had been sent to the Brompton, and although similar to PF it was actually damage from aspirating acid. It is still monitored as it can trigger PF. I found a couple of articles which takes her view on MTX. Hope these help 🤗 🤪

emjreviews.com/rheumatology...

erj.ersjournals.com/content...

Under treatment in this section it discusses use of MTX in ILD with RA patients

frontiersin.org/articles/10...

[wishbone in reply to Runrig01]

Thanks Maureen, that's what i was hoping to her, at least regarding mtx. When i was diagnosed with PF around 6+ years ago. I was taking mtx at the time, but the respiratory consultant did not think that's what caused my PF and thought it was due to RA inflammation, which made sense as I'd recently developed a prolonged nasty cough when my RA was wildly out of control. He did advise me to stop the mtx, not because it could exacerbate the PF, but because mtx can cause certain lung issues of its own which he thought could mask the progress of my PF.

I haven't been to chest clinic since approx a year before the pandemic but did recieve 2 lung function test appointmments during the pandemic, which i turned down because there was no effective treatment for PF so couldn't see the point of risking catching covid in what was a small clinic. So can only presume that i've been discharged.

I will ask my rheumatologist what he thinks about dropping the Rinvoq and going back on mtx, which worked ok when was taking it. I hope not attending chest clinic doesn't make things difficult.......

[Runrig01 in reply to wishbone]

My respiratory consultant said the same that it was more likely the years of uncontrolled inflammation, that caused what they thought was PF. Although it used to be the case that there was no treatment for PF associated with an inflammatory arthritis, NICE reviewed the guidelines last year. The antifibrotics are now allowed to be used in inflammatory arthritis patients. They are more expensive than biologics though, so funding would be a hurdle to overcome. Nintendanib currently costs £2100 per month for treatment.I have still attended my lung function tests, had one last August where I had to do a PCR prior to it, then isolate for 3 days before. I’ve just been a few weeks ago for this years, and was surprised to get the secretary phoning to say consultant wanted a F2F the next day, it’s a 100 mile round trip. My gas exchange has deteriorated considerably, but having seen me she’s not too concerned as I seem to be compensating well. My lung volume is also poor, but I have fused ribs and no chest expansion. She says the fused ribs have weakened my diaphragm, resulting in a hiatus hernia, which is what’s resulting in me aspirating. Thankfully I have an electric bed so sleep slightly elevated to reduce the risk of further damage. Hubby took the day off to come with me, as he was worried at the urgency of the appointment. I’m the opposite and just deal with whatever is thrown at me, with a positive take on the situation. He couldn’t understand why I wasn’t stressing over it, and felt I might not be fit to drive the 50 mile home afterwards. I hope your able to reinstate your respiratory appointments, and get your lung function checked.

Here’s an article about NICE new guidance on non idiopathic PF.

actionpf.org/news/breaking-...

[wishbone in reply to Runrig01]

Sorry for the delay replying but i've had visitors,. Thanks for the links, I'll have a read and get back to you tomorrow

[Runrig01 in reply to wishbone]

No problem, I just hope they help you. No need to get back, understand completely. You take care 🤗

[wishbone in reply to Runrig01]

Plenty of food for thought there. 🤔

Yo take care too.