Covid treatments

Elwyn

As a person who is immunocompromised I am very concerned about the possibility of getting infections and in fact I currently have a non serious but annoying gum infection and am taking antibiotics.

It goes without saying that overwhelmingly the biggest worry over the past couple of years has been about contracting Covid and thankfully I still haven’t had it although I am convinced that at some point I will. It is impossible to protect yourself completely without hiding away in a cave for the rest of your life and that is not a life I wish to lead although I am very careful still to a degree that I feel is practical.

I have recently pondered whether I will ever take another trip overseas and the main reason for this is Covid treatments. I am no where near ready to take a flight, cruise, coach or even train due to the worry of travelling in such close proximity to others but as it currently stands if I were to get Covid I should hopefully receive treatment which will reduce the risk of serious illness significantly.

Therein lies the dilemma of whether foreign travel is worth the risk of not being able to access Covid treatments quickly in the event of needing them. For myself this is obviously hypothetical at present as I won’t be travelling overseas anyway for the reasons previously mentioned but would like to think that at some point in the future I will feel comfortable doing so.

I guess I just have to hope that the virus will eventually become less of a health risk or that other treatments become widely available which give more complete protection but at present am not optimistic.

I am interested to know if others are having similar thoughts.

Regards

Elwyn

Lilymary

I was recently immunosuppressed for a while due to the effects of radiotherapy, but decided to go on holiday abroad anyway for the sake of my sanity. It did feel uncomfortable being among crowds in the airport and in flight, but another member of our group picked up covid (despite masking up etc, being a healthcare worker during the pandemic) and passed it onto myself and my husband before she realised she had it. I’m fully vaccinated and have to say it was no worse than an unpleasant cold - in fact a few months later I caught a “normal” cold that was much more unpleasant than the covid experience. I got hold of antiviral drugs as soon as I got back, I think you need to take them within 7 days of first symptoms, with no lasting ill effects.

But I realise everyone’s experience is slightly different, and I know of a few (also fully vaccinated) who’ve had it recently who had a cough and breathlessness that persisted for quite a while. I’m afraid covid is probably a permanent fixture, much like colds and flu, and at some stage we have to take the plunge and get back out there, while others may prefer a more cautious approach that sadly limits what they feel can do. I still have some hesitancy about mixing with large crowds and haven't been to a club, theatre or cinema for nearly 3 years. i will go abroad again, but will take what precautions I can while I’m there.

It might be worth looking at destinations with low infection rates, and choosing activities that avoid crowded situations, eg being outdoors, street cafes etc. It’s a shame to write off foreign travel indefinitely, when covid is probably going to be around forever now.

frogmorton

Morning @Elwyn

I do understand what you're saying. I am very very fearful of contracting COVID. My husband has had it and I was able not to catch it then my daughter again I avoided catching it. Both obviously in the same house as me I wonder whether I am immune. Seems weird.

Possibly life will 'force' you out of your comfort zone soon. It recently did for me. A friend got seriously ill and died the funeral was last Tuesday and I had to mix with lots of people.

Subsequently two people have tested positive at least (NHS Covid app pinged me 4 times about that date already) so I am extra fearful just now. Fingers crossed almost 7 days later I am still 👌

I ahve also know a few friends who have arthritis who have had it (one twice) they got through it ok and another lady who has RA and is also paralysed has beaten it with minimal effect. I hope it is now a 'slightly safer' strain of the virus.

I do hope you will feel brave enough to travel soon. Sending you ((()))

Toni x

Elwyn

https://community.versusarthritis.org/discussion/comment/702856#Comment_702856

Hi @Toni

Thank you for taking the time to comment, it is always reassuring when you get some kind of perspective from another persons experience.

Best wishes

Elwyn

scotleag

Like everyone else on this thread my wife and I, both 66, have been ultra-cautious and never even ventured for a meal out until last summer. When we did it was open air and with friends who'd all undertaken a test shortly beforehand. Other than that the only trips we made were the sadly all too frequent visits to hospital as my wife has cancer. Apart from hospitals being a 'Covid-friendly' environment we have to travel 50 miles there and back by rail and bus as neither of us drives. Fortunately every single trip went okay.

Eventually we decided we can't keep living like this and decided to get away for a weekend. We were again ultra-cautious. We paid the extra for first class on the train as there were fewer people in the carriage, were masked while travelling and whenever we ventured indoors. Three nights away (in UK) cost us the thick end of a grand but we thought it was worth every penny just to live like normal people for one weekend.

We got back home on Monday afternoon. That night I started coughing and spluttering. My wife was fine. I put it down to a cold as exactly the same thing had happened after a trip to the dentist. I'd tested on that occasion and it was negative.

Yesterday my wife said she was feeling unwell and suggested we take a test just to "rule it out" before speaking to her nursing team.

We both tested positive. We're vaxxed to the max - me six, my wife five - lived almost like hermits for the best part of three years and the first time we go away in three years we end up getting infected. As @Elwyn said in the OP it's impossible to avoid.

Now we have to wait to see what transpires. My wife qualifies for anti-viral treatment and we've got that process under way this morning. Despite having been told from the outset that I'm 'high risk,' I don't meet the threshold for anti-viral treatment - I'm on 15 mg mtx per week. At the moment I feel as though I've a nasty cold and lost my appetite but my wife is worse, staying in bed, taking plenty of fluids etc. Our worry is that this isn't as bad as it gets as so many people end up taking a turn for the worse 5-10 days after testing positive. It's going to be a case of waking up each morning and hoping things are no worse than the day before. The prospect of Long Covid is also concerning, particularly as my wife has treatment and scans coming up within the next three weeks and the treatment (immunotherapy) needs to be on a regular cycle.

We felt so good about getting away. My wife was able to walk for over two hours continuously, something she hasn't done since her diagnosis eight months ago. This just feels like an awful kick in the teeth. As if we're being told how dare we try to live like normal people for a few days.

Anyway, apologies for the long screed but I just wanted to get this off my (congested) chest. We just have to take it a day at a time for now.

stickywicket

@scotleag , I’m so sorry about this. You have done your best through thick and – mostly – thin and now you have the worry of the one thing that all your very many efforts have been designed to avoid.

I find it amazing that you are not regarded as being sufficiently immunocompromised to access antivirals. I think I recall you writing previously that you’d had an antibody test and had none whatsoever.

Frankly, I think you need someone on your side here to plead your case. Would your rheumatologist? GP? If not, MP? I’m sorry you are having to work so hard for this just when you feel least able to do so.

I wish you all the luck in the world. Please keep us updated but only as and when you feel up to it.

jamieA

Hi @stickywicket

I think the NHS have changed the definitions of those requiring antiviral treatment. I think I'm right in saying that initially when these drugs were offered an immune mediated inflammatory disease patient on 20mgs of MTX was regarded as a candidate for these drugs. However that doesn't seem to be the case now with the only mention of MTX being for those with lung disease. The latest list the NHS use is based on a report by an independent advisory group in May 2022 and Figure 1 lists those patients deemed suitable. Patients on biologics are listed as are patients on long term prednisolone at 10mgs or higher.

https://www.gov.uk/government/publications/higher-risk-patients-eligible-for-covid-19-treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies#fn:8

stickywicket

Oh *******! I guess that's me stuffed, then. I just fail to reach the mark on several categories.. Farewell, cruel world😆

@scotleag , how are you both today? Please don't attempt an answer if it's too difficult. I have been thinking of you. Good luck.

scotleag

Hi @stickywicket @jamieA is right to say criteria constantly changing. I spoke to Rheumatology department at local hospital couldn't say what eligibility was. I was on 20mg and only reduced to 15 after borderline dodgy liver and kidney blood tests. I asked about taking it and was told to test again on Wednesday (my MTX day) and if clear to take. Advice line also said if positive test was down to thin red line then 'probably' okay. I'll wait till all clear then take the following day and re-adjust weekly regimen after that. TBH I was more concerned with getting anti-virals for my wife.

Thanks for asking. Yes, you're right, antibody test a few months back showed absolutely zero. So far it's been a lot better than feared. For me anyway. Not so good for my wife who has spent much of the time in bed with coughing and occasional vomiting. One good thing was she got Paxlovid within a few hours of speaking to GP & cancer nursing team and is halfway through her five day course. She's not getting any worse, which is one silver lining. Psychologically though it has been devastating for her. First time away in three years and ending up with Covid. We'd our next trip mentally sketched out. Now that's been scrubbed from the mind. When or even whether she feels able to travel any further than the hospital I have no idea. On top of everything else it's just been so absolutely horrible for her.

We still have this lingering fear things may change now that we're on day four after positive test and we reckon this is the sixth day of infection for my wife and seventh, possibly eighth for me.

Thanks once again for your concern. It really is appreciated.

stickywicket

Thanks for the update and I'm sorry I'm so late in picking it up.

It's a relief to hear your wife has the antivirals and you are doing reasonably without them. I hope that is still the case.

I can easily understand the sadness of contemplaþing no further excursions. I can only suggest one day at a time. You might both feel differently if this recovery continues to go well. Having said that, I think covid has changed my life for good, even though I haven't had it, but I shall never say never.

Keep plugging away and my best wishes to both of you.

Elwyn

https://community.versusarthritis.org/discussion/comment/704004#Comment_704004

I’m really sorry that it seems you have been currently living out my worst fears, I hope you are both coming through this ok.

Best wishes

Elwyn

scotleag

Hi @Elwyn Concerning myself I have to say it's been nowhere near as bad as feared. Nasty cough, runny then blocked up nose. Other than a bit of dizziness first couple of days it's not been worse than a heavy cold though with additional tiredness and sleeping for a couple of hours in the afternoon. I still tested positive yesterday, eight days after initial test and probably 10-11 days since first symptoms. Much worse for my wife though she is undergoing treatment for cancer and thus wasn't feeling all that good to begin with.

Obviously this affects everyone differently but I hope it's some consolation that my experience is a lot better than I anticipated.

Thanks @stickywicket You're right about it changing lives for good irrespective of whether you've had it or not. The difference between the way we live our lives now compared to pre-2020 is incredible. If anyone had told us we'd have spent the best part of three years indoors, avoided crowded places and worn masks most of the time it would have sounded like the setting for a dystopian novel. Yet it's happened and we've all adapted to it so quickly it now feels normal. As if we'd been living like this all our lives.

scotleag

Just to say relieved we both tested negative Monday morning.

stickywicket

Phew! And 👍👍👍 Well done both of you. Now try to relax a little.

Elwyn

https://community.versusarthritis.org/discussion/comment/704433#Comment_704433

Great news, really pleased. 😊

scotleag

Ah, the irony. Just had an email telling me I'm eligible for antivirals if I catch Covid! I'm being sent a pack of lateral flow tests.

I'm assuming this means the guidance has changed recently. Anyone on the same mtx dosage as me (15 mg weekly) or higher who hasn't been told they're eligible for antiviral treatment should contact 119 and ask if they're now eligible.

FWIW my wife's experience with Paxlovid was that she hated the taste and it lingered all day when taking it and for a couple of days after completing the course. Whether she benefitted from it we don't know. She didn't get any worse after taking it but she may not have got any worse anyway. I didn't and I wasn't on it.

Anyway, just putting this out there for anyone who may now be eligible but unaware of it.

JenHB

I had that email too - I'm on 25mg MTX (and 200mg daily of hydroxychloroquine). I went online and ordered a pack myself. Tested yesterday as am feeling wiped out and very tired (was also a bit snuffly) but was negative.

Elwyn

https://community.versusarthritis.org/discussion/comment/704824#Comment_704824

More irony! After starting this thread just over two months ago and keeping the dreaded Covid at bay for almost three years, I finally tested positive on Wednesday. Feeling pretty rough with cough, sore throat, constant headache, fatigue etc but fortunately have started Paxlovid today so am hopeful that this will give me extra protection and ease symptoms more quickly. As you say, know one knows if it will help as everyone is different but I’m taking the view that I’m going to take any help going as you would have if offered.

I have to say that I have personally found the process really easy, I am taking 20mg MTX and currently nothing else for my condition but I recorded my positive test straight away and was contacted in under 24 hours and a prescription was issued.

Regarding your wife’s experience with the foul taste, I have taken this on board and my wife just bought me some Haribo tangfastics which are the sourest sweets I’ve ever had so I’m hopefully prepared. If they work maybe they’ll become available on prescription as well! 😂

Hope your recovery has continued to go well.

All the best.

scotleag

Sorry to hear this @Elwyn It's almost as if the bloody thing is searching out everyone who's managed to stay clear of it thus far. We know of only three acquaintances who have still avoided it. Good to know you got the Paxlovid quickly. Hoping that rotten as it is it doesn't get any worse and Paxlovid should help with that.

Regarding post-Covid recovery, I was back to normal pretty quickly. My wife's recovery took a bit longer but she has been able to go for three separate cancer treatments/scans inside seven days and as I think I've mentioned before for us that involves a 50 miles return journey by public transport each time.

OTOH we both came down with colds and hers has affected her hearing. I switched the TV on a couple of nights ago and the volume was at 78 as opposed to the usual 22!

Can't say anything more than wish you the best of luck and hope you let us know here how it's going and when you're free of it.

scotleag

Just wondering if you're okay @Elwyn as it's a week since you posted and nine days since testing positive. Hope you're over the worst.

Elwyn

https://community.versusarthritis.org/discussion/comment/705396#Comment_705396

Hi @scotleag thank you for your concern, as you say it definitely seems like the virus is finally catching up with those of us who have avoided it so far.

Thankfully I have now recovered and have been testing negative for the last couple of days, just a sniffly cold remains and feeling really tired but I’m assuming that is probably quite normal. I definitely feel as though the Paxlovid helped me recover so am thankful I was able to access it.

I do feel that the past three years has been a life changing experience and it will take a long time to feel ‘normal’ again if ever. However, I am very relieved to get through this relatively unscathed and feel much more positive now about the future.

I Hope you and your wife have continued to recover from Covid and that her cancer treatment is going well also.

All the best, Elwyn

scotleag

Thanks @Elwyn Good to know you're on the mend. You're absolutely right about this thing being a life-changing experience. It has for everyone, young, old, sick, healthy. Let's just hope society doesn't have to go through it ever again.