update on Covid treatments

[Runrig01]

I received a email today with updated information. This is just in case people don’t receive emails from the nhs. As of 27th June you will no longer be contacted, if you submit a positive test. The onus is on the patient to contact either their gp or specialist to consider if they should receive antivirals.

At present we can still order tests on the government site, it does say this may change in October. They also say shop bought tests and those from pharmacies will be accepted. So I wouldn’t be surprised if come October the onus is on us to buy our own tests. Seems the government are winding down anything to do with Covid.

[medway-lady]

I think this might be good news as Covid is downgraded and people not getting so ill.

[AgedCrone in reply to medway-lady]

Yes……I think we need to stop all this counting booster vaccinations & start treating Covid the way we treat Flu. Have an annual vaccine & get our lives back to pre Covid days!

But I was in Waitrose this morning & literally half the shelves were bare ….so normality is still a way off!😩

[Runrig01 in reply to AgedCrone]

yes i agree, I’m not complaining. Just wanted to let others know what the process will be as communication from the government has never been smooth. With plenty eligible never hearing from them.

I do think it would be helpful if immunosuppressed got an antibody check at 6 months to see if they really need to keep boosting their levels.

[Neonkittie17 in reply to Runrig01]

They’d need to do a quantitative antibodies test though as qualitative yes/no isn’t enough.

[Neonkittie17 in reply to AgedCrone]

Each and everyone will find their own way on this and do what’s right for them. No one should be rushed/forced to do anything whether it’s be made to feel they should be getting vaccines, or not wanting them. It’s a personal decision, and risk. With better meds like Evusheld 2 on the horizon and improved meds in general there is great hope.

[AgedCrone in reply to Neonkittie17]

I very much doubt if Nice will recommend any sort of Evusheld now.

There are questions asked about it in both Houses of Parliament most days ….& the answer has not changed in months.

[Neonkittie17 in reply to AgedCrone]

Yes, questions are always being asked on Evusheld as there is a dedicated campaigning group ensuring it is kept in the public eye. Many of us in the group are asking our MPs to ask these questions. The Supernova trials are under way so it is expected to be early 2024 when available at the soonest. Covid will still be around then and still a threat to a certain percentage of the more vulnerable people healthwise.

Maybe NICE won’t recommend it .. I think it will be recommended for a very high risk group of people who could be eligible to get it on the NHS, but we can buy now the current version or the improved version next year if we want it. Also a different political party in charge could change everything from how it is. so 🤷‍♀️

[pippin_fort in reply to AgedCrone]

Easy for some, more difficult for others of us to ignore Covid who have been destroyed by the virus. I don’t need to fear it for a few months as I have just had it again for the third time, with treatment for the third time. I have collected more issues after each bought. Addisons disease is my latest addition, but the now severe asthma along with multiple pneumonias and infections may be what finishes me off ultimately. Life can go on for some but I now need to protect myself from everything.

[Neonkittie17 in reply to pippin_fort]

Sorry to hear this Pippin and how the virus has affected your health, and yes you do need to protect yourself and do whatever’s right for you as do we all and we should never made to feel uncomfortable become someone else feels differently. In general it isn’t a case of someone wanting to get every jab going or every med .. I’d say it’s getting what’s needed and necessary for our own situations. Covid is still here and we are moving towards a better place re treatments and procedures, but for some of us there is the need to remain as safe as we can be. I hope your health can become steadier soon. Best wishes.

[pippin_fort in reply to Neonkittie17]

Thank you. We are not all on a level playing field are we.

[Neonkittie17 in reply to pippin_fort]

No that’s true and exactly how it is.

[Runrig01 in reply to pippin_fort]

Sorry to hear you’ve been struggling, and developed Addison’s. I too have adrenal insufficiency and it can be incredibly frightening both for us and those around us.

I completely agree that not everyone can move on, as we don’t all have the same protection. It’s also not a case of people wanting every vaccine or medication, but it’s often essential for many, especially those who aren’t creating their own antibodies. No one should be made to feel uncomfortable for wanting to protect themselves. So you keep looking out for yourself, and seek out what you need. It is rather disheartening when those who were also vulnerable and should understand, are of the view that covid is no longer a risk, when it still is to many. Stay safe 🤗

[pippin_fort in reply to Runrig01]

Thank you! 😘

[Neonkittie17 in reply to Runrig01]

Hi Runrig, Yes exactly all of that. As strange as this might seem, it’s often as though someone pops up every now and then .. (but sadly too frequently, lately) wanting to downgrade/demean your health issues and tell you it’s all ok and it’s over and done with now. If only. No, it isn’t. So disappointing though that some of these people take strange satisfaction in unsettling those who are still needing to be cautious. Sad, but people aren’t always helpful, not that I’m expecting anything .. never have been, never will be but I will always make my own decisions about my health on such an important subject. x

[Runrig01 in reply to Neonkittie17]

🤗👍

[RApatient in reply to Runrig01]

Oh my did I definitely find out that COVID is still a risk. All the time never was positive until now and it slammed me. Had a Rituximab infusion which lowered my immunity severely and was in hospital with COVID pneumonia for 6 days. I was given antivirals and a so many other meds. I am home but still sick. If COVID doesn’t kill you, all the side affects from meds just might. Everyone be safe and stay well m.

[Runrig01 in reply to RApatient]

Sorry to hear you’ve been in hospital with it, and yes it’s still around, and people are still getting seriously unwell with it. Certainly your Rituximab would certainly be a factor in you feeling so poorly. Hope you’re able to rest and feel better soon. Take care x🤗

[Knip in reply to RApatient]

I'm really sorry to hear that you have been, and still are, going through the mill because of Covid. One of the biggest dangers with the virus is that people can carry have it and, unknowingly, spread it without having symptoms. I do hope that you will soon be feeling better. If someone has a cold or flu you know and you can keep away...not always so with Covid.

[RApatient in reply to Knip]

Thank you for your kind thoughts

[AgedCrone in reply to pippin_fort]

Between the bouts of Covid, have you spoken to your Consultant about how many vaccinations you are advised to have?

Too many may be confusing your immune system & it is the same virus repeating itself …..causing all the issues you are confronting?

I finally caught Covid ..after just 4 vaccinations……thankfully I wasn’t too ill ,& apart from a niggly cough I have no after further effects .

We must all take advice in the Autumn & get our clinician’s advice as to how we proceed with vaccinations.

[pippin_fort in reply to AgedCrone]

I am following the advice of the respiratory team. I have had 6 vaccines spread out over time. However, I had Covid very early on in March 2020 the first time when no vaccinations were available and very little was known. I had a PE and damage was done. Ever since I have had repeated infections/pneumonias take a raft of medicines and supplements to deal with all the issues . My immune system is over-reacting to everything when it can be bothered to react! The last 2 bouts of COVID were less severe than the first, but I had monoclonal antibody treatment both times. I think the treatment and the vaccines are what are saving me at the moment so I have no plans to not take anything offered as immunity and the efficacy of the vaccines wanes over time. Unfortunately I had both Covid and the last vaccine at the same time so the vaccine did not get a chance to work. I had mild asthma before all this but it is now severe and uncontrolled. RA may also be adding to the problems, but I still count myself lucky as I am still here!!

[Runrig01 in reply to pippin_fort]

Exactly you keep topping up your vaccines. I intend to do the same. I too have severe asthma, worsened since my ribs fused and having no chest expansion. I have Atelectasis which is pockets of collapsed lung, and scarring from acid aspiration. So both my rheumatologist and respiratory specialist say to keep taking everything offered. Respiratory said if it gets into my lungs I’ll be in trouble, due to the Atelectasis and no expansion. Hope you start to turn a corner soon.

[Neonkittie17 in reply to Runrig01]

My immunologist always says re Covid boosters that people who are highly immunosuppressed “need to keep nudging their immune to produce antibodies“. This weekend will be my third booster due to me starting again from scratch in Spring 2022 and being a year behind. I’m asking my immunologist’s advice shortly at our review, but in another 4 months it will be the Autumn one and I may be caught up enough in his expert opinion to go to 6 monthly, thereafter and it could be the JCVI recommendation for us too, by then for 6 monthly, but the ab’s blood tests will show too if I’m responding or need an extra one as sanctioned by the consultant.

[Runrig01 in reply to Neonkittie17]

fingers crossed for you. I had my 7th early April on the rheumatologist and respiratory specialists advice. 🤞

[Neonkittie17 in reply to Runrig01]

Thank you. Yes I’ve had consultant letters telling me I should continue with the boosters. They wouldn’t tell us so unless it was needed. x

[TheBoys]

I think this is good news- things are getting back to normal now.

[AgedCrone in reply to TheBoys]

Yes we must be encouraged to think of Covid as a past nasty experience & not hang on to worrying about getting regular drugs & vaccine boosters …..just in case.

I’m sure a lot of people are worrying unnecessarily & that is not good…..we should look forward, live our lives sensibly, but not linger waiting to get more & more medication.

After all- we now know that there are vaccines that work, & come the Autumn I’m sure there will be some information from NHS on how we will be offered vaccinations in the future.

[Neonkittie17 in reply to AgedCrone]

Gosh .....

[Paula-C]

I've had the email as well. I had COVID in April, I'm on enbrel and mtx, I registered my positive result online like I was told to do, next day had a phone call from a doctor who said I'm no longer eligible for antivirals, data now shows that I am not at anymore risk than anyone else. My husband had it at the same time and he was a lot worse than me, I wasn't really too bad at all.

[Neonkittie17 in reply to Paula-C]

Sorry I didn’t see this before which explains who told you you were not eligible. x

[Paula-C in reply to Neonkittie17]

It was the doctor from the covid centre who phoned me after I'd reported my positive test on line. I was asked if I had any other illness and was I on steroids, it was no to both questions.

[Neonkittie17 in reply to Paula-C]

I think maybe a different scenario if you’d had one of your own GPs. It’s not black and white and never will be.

[Runrig01 in reply to Paula-C]

yes the guidelines were tightened in March. Tnf biologics and jak inhibitors no longer qualify. Also MTX is only eligible if taken for interstitial lung disease. I’m also on prednisolone and hydrocortisone, az well as benepali and MTX. I do have interstitial lung disease, but was prescribed the MTX prior to that for my peripheral symptoms caused by my AS. So I probably wouldn’t qualify either, as my steroids come to 7.5mg rather than the 10mg. Depends on the clinician I speak with 😂🤪

[MadBunny in reply to Runrig01]

Thank you for this information. I'm on a biologic tnf and never knew the guidelines had changed. Much appreciated 🤣

[Runrig01 in reply to MadBunny]

here’s a screenshot of the info re tnfs

Tnfs

[MadBunny in reply to Runrig01]

thank you 🤗

[janmary]

thanks for posting

[Cirrostratus]

Hello! I was going to post about this new email too - but just to warn people to check the Junk email folder as that’s where mine went - only just spotted it - as the NHS appears to have used a brand new email address to send these out, probably unrecognised by many email providers and straight into the spam box!! Interesting thread, thank you, looks like I’m far from eligible anyway.

[Intheend]

Thank you for taking the trouble to bring us up to date with the latest guidelines… the goalposts seem to be ever moving!

[Blackberrywine]

That's good. This has gone on for long enough.

[MJSlide1958]

Hi Runrig01,

Would you know what the time span is to take an anti viral if testing positive to Covid? I heard that you can only take it within a few days of a positive covid result. Any advice is much appreciated, getting through to GP admin team is a nightmare! Thanks

[Runrig01 in reply to MJSlide1958]

you have to start within 5 days of symptoms appearing. Don’t forget you can also contact your rheumatologist, who are usually the ones responsible for prescribing the meds that make you eligible. Although your gp is probably more aware of other conditions that may contribute to eligibility.

[MJSlide1958 in reply to Runrig01]

Thanks so much for bringing to my attention. Much appreciated

[Tourk]

That's great news, sounds as if covid has finally been down graded. It still possess a threat to some people so it's important to keep up with looking after our health.

Taking vitamin D getting outside exercising, but the worst is over.

There has been some very incurrageing results from using CBD oil to help against a range of flu type symptoms.

[Otto11]

Thanks for posting as I wasn’t aware. I can’t see me contacting my GP as it was useless last time & didn’t get a call till day 5 when I was offered 3 days of infusions 50 miles away as it was too late to offer tablets. I do hope the people who really need them will still get access. I will look out for an e mail x

[Runrig01 in reply to Otto11]

This is a different email address from previous emails. Cirrostratus mentioned theirs was in their junk folder so may be worth checking there. The address it comes from is:

[e-mail]

[Otto11 in reply to Runrig01]

Thanks. I haven’t received it yet but will keep looking x

[katieoxo60]

As I understand it the only COVID help will be 6monthly vaccines for the high risk as from the end of June. Do let me know if I am wrong. Tests are available at a nominal fee on line for five. That way its a little cheaper for the patient, sadly not all can afford the tests so we still need to be vigilant about our own health Runrig01, take care

[Runrig01 in reply to katieoxo60]

until at least October the tests are available free for those who receive the letter or email saying they may be eligible for antivirals. It doesn’t state what the change is in October, but it sounds as though it will either be tightened re eligibility or we start paying.

The antiviral treatments are continuing, it’s just going to be your gp or specialist organising it, either a prescription for the tablets, or hopefully the infusion for those that can’t take tablets as it interacts with many meds. The covid vaccine is still available and will continue for those on immunosuppressants, even if you don’t qualify for antivirals. So if your on tnf or Jak inhibitors you will still be offered the vaccine, despite it no longer giving you eligibility to antivirals. I would still urge those on tnfs and jaks to inform their Drs as discretion can be used depending on comorbidities and other heath conditions. Also if your on other immunosuppressants that may nudge you into the qualifying category. Hope this makes sense.

For anyone interested in the recent data, you can access it with this link. You can also put your postcode in for local info. Despite numbers falling nationally, my area admissions are up 20%. It also gives you the percentage that havd taken up their vaccination offers.

coronavirus.data.gov.uk/

[katieoxo60 in reply to Runrig01]

Many thanks for details

[Green230461]

Thanks for the info I have not heard this🙋🏻‍♀️

[Nuttyshirlz]

yes I also got the email yesterday and it’s just said on tv 5000 ppl tested positive yesterday just makes you wonder how many people have it that aren’t tested.

[Runrig01 in reply to Nuttyshirlz]

I know. There’s no true way of knowing how many have it. Most I know don’t test if they have colds, sore throat etc, and continuing going to work. I’m certain it will start to increase in Autumn when people are indoors more again.

[Jackie1947]

Yep had the same email last week. I'm at number 6th and unless there's another pandemic I've done with boosters.

[Knip]

After reading your post I looked in my junk mail...and the email form the NHS had gone into there. I have no idea why because the email address was current one. So thank you for posting. 👍