I'm confused as to whether what causes a compromised immune system in people with pmr. Is it (1) having pmr per se, (2) being on pred, or (3) a combination of these two factors?
I'm having a flare at the moment I'm trying to work out whether I should increase my dose, or, with COVID-19 in mind, should I stay on my current dose and endure feeling crap!
It’s a bit of a mixture. On the one hand part of your immune system (it has various mechanisms) has got confused and it is attacking certain of its own body tissues, namely arteries to certain muscles. The only way of stopping the damage is to damp the immune system by suppressing it. Pred is fantastic at that but it also suppresses other bits of it too which makes you more susceptible to infection. However, it is dose dependent so the higher the dose, the more you are suppressed. Under 10mg is much better than 30mg say. Saying that, even starting at 60mg I barely got a cold and I had plenty of social contact.
As for Covid, I really wouldn’t stop necessary treatment just in case you get it. It is not a rampant killer, though people have died, and for most it is mild. Flu and others every year kill many many people and there should be the same concern but we’re all used to it.
If you’re having a flare, you need to get that back under control first and foremost.
As for Covid-19 - no point worrying about that at the moment. You may need to somewhen, but not today.
I think crossing bridges when you come to them is the way to go. I doubt the dose of pred will be that significant in whether or not you get Covid19
Yes it's a difficult trade 0ff. Generally, I think it's right not to worry about things that might never happen. On the other hand, if there's something you can do/not do to make the thing you are worrying about less likely, it makes sense to do it. A bit like wearing a helmet in case you fall off your bike...
Or washing your hands and avoiding crowds ...
Indeed. So returning to my initial question, in addition to hand washing and crowd avoidance, is it worth tolerating some inflammation to avoid taking more immuno-suppressant drugs? From the responses above, it sounds like the latter is a step too far! Interesting talking point anyway.
I don't think so no. I am reducing my pred dose for a PET-CT scan next week. It was fine down to 11mg - a bit more stiffness but obviously the flare from January is fading now things are a bit less crazy. Then suddenly at 10mg there was a marked change. Having a go at a bit less until Tuesday now - and I just want to sleep as well as the stiffness being there. I wouldn't thank anyone for having to feel like this for the foreseeable future and have to function as well!
What is your cumalative pred dose over the years do you think?
😂🤣😂
Just seen a couple of replies by her - she's alive and kicking ...
Just struggling a bit lately so following my own advice with less activity and screen time . I'm only reading things and giving the odd replies in the , get to Aand E category.
Thanks for asking x
I, too wondered where you were. Sorry to hear you struggling a bit at the moment but pleased you are taking a back seat for a bit. You’ll be in my thoughts as I work on my trombone tomorrow. Big hugs. X
You will laugh , actually maybe I will write a post , but let's just say at physio yesterday getting back to using my " horns" was discussed as part of my increase in therapy. xx
Eh......”horns”? Am I being thick??
Me too...
Blearyeyed plays trombone and clarinet. 🎶
I re read you reply and finally got it. I haven't used a trombone since secondary school. 🎷🎷
Well I took up trombone at 75 years of age and love it. I have said before, there is the makings of a Big Band among the members of this forum. It’s been done recently with the film Military Wives! So why not the PMR PREDS. 🤗
I did sleep order a ukele that I keep trying to learn but I don't read music. I did like the trombone as I can play by ear and of course it's on a sliding scale. 😉
You don’t have to read music with the ukelele. The cord positions will be shown on a piece of music- just like guitar chords. Keep at it - it’s a nice instrument. Remember Joe Brown and the Bruvvers? Some good stuff on you/tube to spur you on.🪕
I keep trying!
I thought you were the one whom plays the trombone , oh ,there is nothing more hilarious than a funny chat between a bunch of friends beleaguered with brain fog !
As you were! My brain has switched off for the day! 🥴
Oh for goodness sake .. I get it now. Duh!!!
Yes , my Sax and Clarinet , I could have said he wants me to get out my pair of tooters , yes the innuendo was raging in my session yesterday , again the people outside the curtains looked genuinely worried when we emerged.
🤣😂🤣
😂😂🎶🎶 (sorry, meant sax not trombone.
OK. I presume it brass related rather than this article on bone spurs and mobile phone use... 😁
fortune.com/2019/06/20/horn...
😋😂😂😂😂😂😂 love you Poops !😘
I am not warning future me about anything I have done...leaving it as a nice surprise .
It is a mixture as Snappy says , plus the general weakening of the body over all while coping with a Chronic condition and akso processing whatever drugs you need to take.
It isn't , however , worth trying to rush a taper or not take extra steroids or any of your current medications for a flare of any of your conditions in the hope that it could prevent catching a virus or any sort , including Covid 19.
The only way to really reduce the possibility of catching this , or Flu , or any of the diseases that can affect you more seriously with a Chronic Health disorder is Disease Awareness , Hygiene Control and Maintaining your General Self Care in Nutrition and Pacing .
So , hand washing , no unrequired physical contact especially in public places or events. Making sure others with an infectious illness of any sort don't visit you or you don't visit them .
Staying away from others when you also have symptoms of a virus or infection , we can pass something on too.
Getting visitors to visit the bathroom to wash their hands and face and making sure they remove outdoor gear before entering the main house.
Making sure things that are used regularly by people in public areas have been wiped before you use it , then washing or wiping your own hands before you eat or touch your face after using communal equipment or cleaning it .
Don't pick up others tissues or rubbish off tables in cafes , in cars or offices . Make sure litter bugs take their own stuff with them or clear up after themselves.
A scarf around your face in surgeries or on public transport is more than adequate as long as you don't keep pulling it about it playing with it , then it becomes more of a health risk in itself, just like face masks or gloves have in China, as you are more likely to spread the virus on yourself from playing with the mask with unclean gloves or hands in outdoor or public places .
These things are as important for all virus or bacteria , all year around, not just Coronavirus, for any people with compromised health , not just with compromised immunity or from using steroids, especially if they have issues that affect the Heart or Lungs.
General Self Care like good nutrition , adequate daily fluids are key really. Extra vitamin C with your meal can help during the winter . Light exercise and some daylight and fresh air . Pacing yourself and reducing Stress . It all helps to maintain more strength in your overall body health which in turn helps you fight any disease you may get while coping with a Chronic condition like PMR . Controlling Flares in existing conditions is also vital as your immunity is as likely, or more likely, to be compromised after you body becomes weakened by coping with Inflammation from a current illness as it could be by taking your necessary medication which can suppress immunity.
Thanks for taking the effort to write all that. Of course, I was already aware of much of it (hard not to be if you pay any attention to the media!), but it is always handy to have a comprehensive "refresher". Wonder if it would be useful to "pin" that somewhere so people not reading this thread can benefit?
I would just add that surgical masks have little use in protecting yourself. The way to use one is for an infected person to protect other people. I like the scarf idea - that's how I use mine 😊
Plus it's easy to wash !
I don't understand the problem... Its neutral advice?? 🐘
I'd have thought so , or maybe there's something about males we don't know about!🐘
I don't know what going on now!?
I cant see what the problem is with bee's advice whether anyone is male or female either.x YBB
It's seemingly a big decision. At this rate you may be the only customer not to cancel. Ihave you been following Mrsnails posts on the info from companies?
I am not sure a straightforward/ simplistic view of health is gender specific. The covid virus barely registers on my health worry scale, and know for certain few of my chronically ill online and RL friends of both genders are straightforward too. I and they aren't stressed about the idea of washing hands etc. It's just general personal hygiene..... Now that's something I often notice a gender divide on.... ➗😂🤣😂🐘
Agreed. I must admit I don't think I'm sufficiently conscientious to rigorously follow all that advice. Nevertheless, doing any of it must be better than doing none, so the advice is still welcome!
I guess the thing to remember is that they are actually really simple things to do in your daily life and that we don't just do them to prevent Covid19 , it's equally important to do it to prevent yourself going through the whole of winter with a succession of colds , a nasty flu or stomach bugs. All of which are as bad to the immunity comprised or those with chronic health issues and help us reduce the amount of Flares of pain or PMR activity we get associated with getting an infection.
The weaker we become from dealing with any acute infection the less able we are to cope with our Chronic symptoms 🐘
I may be on the wrong person entirely.... But were you a nurse or something. Apologies if the wrong person... But 20secs isn't long at all in any case.
How long do you reckon then? This
cdc.gov/handwashing/show-me...
suggests 15-30 secs removes more bugs than shorter times. And if you want it in pictures:
That is a kerfuffle but I suspect your patients were pleased!
I have had a few cleaning jobs when I had to go into the gents to clean. A bucket of bleach thrown through the door! Even the gents in places of business were disgusting......
Depends what you are doing doesn't it?
where is your cruise going to? or did you say
I do not like washing my hands in the restroom..probably more germs on the faucets, etc most restrooms have a sanitizer unit to drop foam on the hands, (that foam Purcell stuff)...good restrooms either have no doors or only a “push with your shoulder to open”” what good is it to wash hands then touch the door handle, etc...I really prefer not to use them at all but sometimes ya know.....us older guys on pred gotta go when ya gotta go...
Got to tell you women's toilets aren't much fun in general. Try hovering on pmr thighs before you even think of washing hands with boiling hot or no hot water, empty soap dispensers and then those blow drier things that chuck bacteria everywhere. 🤢
That's why you wear jeans ... Wave your hands around first ...
While I am hovering??
No - idiot, the handwashing bit! But I never leave the house without going first - can't remember when I last used a public loo ...
😂🤣😂
I lied - have used a hospital one recently - but they provide paper towels AND alcohol stuff ...
I couldn't press the soap in the hospital this week... They put all new loos in. But it was a stainless steel loo. Better for germs supposedly but horrid.
German motorway parking places have that sort of loo - free. I comfort myself with the concept they are hosed down regularly and are so cold most bugs will have been freeze-dried ...
Look after the PMR. But do all the things needful to avoid picking up unwanted illnesses. Part of it is what dose level are you at, how long have you been taking pred, are you prone to catching everything going anyway? I am more susceptible to colds than I used to be, but in general my immune system remains strong.
When your number is up, it's up. If your number isn't up, you're fine. No one knows when our number will be called or in what manner. All we can do is live as healthily as we can, and with PMR that includes keeping our symptoms under good control. But also get lots of rest, enough exercise and eat healthily. And, as they say, wash your hands and don't touch your face!!!!
Don’t touch your face! It’s not that easy....
youtube.com/watch?v=mA1wqja...
I tried to find that somewhere other than on FB so I could share it!!! Silly woman!!!!!!!!
I know, I know! As I posted elsewhere the moment I remember not to do it my hair starts to tickle my cheeks or forehead, something falls into my eye and my nose develops an itch!
I'm the same! Strange we are so fond of our faces.😂😂
Someone was telling me yesterday that the advice she got from a relative who works in "crisis management" (he's busy just now) is to try and concentrate not on stopping touching your face but on not raising your hands above shoulder level. I've not tried it but apparently it's supposed to help...... Also she was told to sanitise a pen and use it to e.g. scratch her nose and pull her hair back etc. I'll give it a try today I think and see if it works!
I have been reading the posts in this conversation about suppressed immune system as I will hopefully be flying to Spain later in April. I already take all the sensible precautions when using public transport but found additional helpful tips here.
Loved this. Really gave me a laugh and has made me aware of the number of times I touch my face, thanks.
I don't think it's something you have to worry about it's just something that it becomes natural to do , common sense hygiene really , it's just people seem to get out of the habit . I saw the results of an app that showed the difference in the progress of the disease between people using old habits and people washing their hands as directed.
The non hand washing saw red patches , an epidemic, in just over a week , the other had only reached orange in over 6 weeks. I'm just suprised that basic hygiene rules have become so unusual .
That is countries without decently priced wine ...
Sounds great!! I'd wait and see but if I were a cruise goer probably go. might skip a mediterranean cruise ...
Not bad with Red Bull
Hi DadCue - call me a 'party pooper' - but I wouldn't get on any cruise anywhere at present - although to be honest they would never have been my cup of tea anyway. If you really think it is worth the 'risk' then you must REALLY want to go and maybe then you should - but from lots of recent evidence - not an 'ideal' environment at present whether you wash, scrub, disinfect, etc etc - The infection levels on those lately quarantined ships were very high and then there was all the ships' staff who had to (still) deliver the services people need/expect and many of them unfortunately got infected as well.
Cruises air travel or not I realise most people won't die from Covid-19 - even when it becomes pervasive everywhere - which it likely will - but why would you want to test your own personal vulnerability any more than necessary - there will be 'other' cruises one day ... with a much more relaxed atmosphere - surely !?
Just saying ....
Compromised immune system & Coronavirus Part 2
Is my immune system on the blink? 
Compromised immune system on Pred?
