keeping away from people !

[Pastamama]

Not really sure how to word this one ! Having spoken to the doc they pointed out the obvious about being on pred , lowered immune system etc so be aware whilst mixing with others. In a nutshell, any tips on how to go forward with this ? For instance mask wearing , not going into enclosed places with crowds ? I know there will countless thoughts and countless scenarios on this one , !Ultimately it will be my choice of course but just wanted to throw this out there. Too big a question maybe ? Thanks

[DorsetLady PMRGCAuk volunteer]

I was on much higher doses initially for GCA….and yes it was way before Covid, but I never had an issue with ‘catching’ any virus etc mixing with others, flying to Spain on a couple of occasions on holiday and long haul UK to NZ .

Would I act differently today, maybe.. but not enough to stop getting on with life.

[Pastamama in reply to DorsetLady]

Thanks Dorset Lady , my thoughts exactly to carry on with life . Guess they just put the wind up me with the “warning”, doing their job I suppose . I think I was wondering if wearing a mask when out and about was a popular idea amongst the forum , as this had been suggested . When I posted , thought this is probably a bit of a daft question , but I did it !!

[DorsetLady PMRGCAuk volunteer in reply to Pastamama]

You do need to be aware that your immune system is suppressed. But that is a very individual thing as well - I only had one bout of oral thrush early days -but nothing else for the rest of the time.

But then I’ve never been a delicate little flower -good old Anglo Saxon stock with a bit of Viking thrown in for good measure 😳.

I do know others aren’t so lucky.

[Pastamama in reply to DorsetLady]

Ha , let’s hope half Italian , half Yorkshire’s up for the job !

[DorsetLady PMRGCAuk volunteer in reply to Pastamama]

Sure it will be...

[SnazzyD]

Like DL I was on higher doses than 15mg and pre-Covid. I didn’t have much of a problem with viruses but then again I didn’t seek them out particularly. The main issue was my own flora, so it was easy to get fungal infections, UTI’s, sore gums, upset gut etc. I also got more cold sores and sore gums. I’ve always been prone to food poisoning so was careful anyway, especially in hot countries. Since Covid and being off Pred I avoid crowded situations more than I did on Pred and wear a mask if I have to be in a crowd. I have found Covid to be far more of a worry personally having had repeated infections.

[Pastamama in reply to SnazzyD]

Really good info ,thank you . I agree with you there , had Covid before this all started .

[PMRpro Ambassador]

I think some doctors really overegg the lowered immune system aspect. I have not knowingly had Covid at all. In all the years on pred, most of it at well above 10mg, I have not had more infections than in the years before. I don't have a massive social life I admit, but we used to eat out regularly before Covid and I go out when I have visitors now. I use public transport and occasionally the bus or train is packed with schoolchildren and some are packed anyway. I do carry a mask still and if I feel overwhelmed in the train or bus I wear it.

But in the years I've been on pred, over 15 now, I have flown to the USA and Canada a few times and the Far East multiple times, always long haul flights. always hours at the airports. Never caught anything nasty. I hate being crowded anyway - maybe I simply avoid the eisk naturally!

[PMRpro Ambassador in reply to PMRpro]

PS - I suspect it is things like thrush and UTIs that are more generally a problem. And for those with delicate chests, URTIs may be difficult to shake off

[Pastamama in reply to PMRpro]

Very encouraging, thank you

[Bringonthemusic]

I have been under a specialist since 2020 for PMR and then in 2022 developed GCA. I was told to stay at home. I understand I was diagnosed just pre-covid so advice was probably smart. However, the advice was continued and I have been home since then. I wear a mask to go out for a walk and to all medical appointments. I am now at 3.25mg of pred and the advice is now go out with caution. Do I recommend the stay at home advice I was given... No, it's been really a long haul and it feels very unhealthy to have little social interaction, albeit I have yet to catch a virus, but like others it hasn't stopped other issues flaring.

[DorsetLady PMRGCAuk volunteer in reply to Bringonthemusic]

I think the advice all along probably should have been 'go out with caution' - but it was an unknown quantity early days with Covid, so the advice given was assumed to be the safest at the time.

In hindsight [always a great thing], the restrictions put on people, especially staying at home has had a detrimental affect on so many people - from the very young not learning to socialise, to school children missing out on learning and knock on effect on GCSEs/A levels etc, university students and graduates working from home with no concept of work in a work environment in a team. and maybe for everyone - their mental health.

[DogAgilityObsessed in reply to DorsetLady]

At the other end of life, people spent their last year or two shut away from others. My parents both got diagnosed with dementia and I’m sure Covid didn’t help their decline which in my fathers case (he had Alzheimer’s) was rapid and he died a year ago.

Covid and the restrictions affected so many people and I’m sure when a pandemic strikes again it responses will be different.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

That’s very true….

[Koalajane]

I have been on steroids for nearly 7 years and in all that time I have gone out as normal. I have had one cold that lasted for 3 days. I feel my immune system is stringer than my husbands who has had far more colds than me!

[darkred]

We are all different in how we react to things. Since being on pred (started April 30, 2023, I was hospitalized early October with my first bout of diverticulitis with abscesses. Internal shingles started Dec. 1 and shingles rash Dec. 15. I am still dealing with shingles. Thankfully, my doctor prescribed a med for nerve pain and I'm now able to sleep at night.

I can't blame pred entirely. 2023 was an extremely stressful year.

About falling...ever since a friend advised she fell and broke a bone when stepping off a curb, I am very mindful of curbs. It's also good to be reminded that stocking feet can cause slipping and falling. (Been there, done that.)

Thanks to PMRpro and DorsetLady and many other contributors to this forum!

[Pastamama in reply to darkred]

Thanks to all for advise on this

[Poshcards]

If it worries you, and clearly does from the above, then just wear a mask and keep hands etc clean, I do x

[agingfeminist]

This is very individual. But I have had a cascade of infections since being on pred that I have never had before...a systemic fungal infection, cellulitis. My skin breaks easily and then often becomes infected (usually mild). I live alone and the prospect of getting a major infection would be really bad news so I am very careful and meet people outside in my garden. But I am fortunate to have a lot of work (online) and daily contact with colleagues by phone.

I have definitely become a recluse but I think that this is my natural happy place. There are a few of us who find much social interaction rather irritating, to be honest. Takes all sorts!

[random901 in reply to agingfeminist]

Absolutely concur with final paragraph and get annoyed with friends & family who deem it unhealthy and sad. I'm happy with dog, though do see people from time to time. Picked up appalling cough and cold last time I was on a train - someone coughing continuously near me.