Covid treatments

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

Comments

  • Lilymary
    Lilymary Member Posts: 1,664

    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
    frogmorton Member Posts: 28,179

    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
    Elwyn Member Posts: 16

    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
    scotleag Member Posts: 70

    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
    stickywicket Member Posts: 27,211

    @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
    jamieA Member Posts: 379

    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.



  • stickywicket
    stickywicket Member Posts: 27,211

    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
    scotleag Member Posts: 70

    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.

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