Social Contact

[AshPen9]

Hi, I've just been just diagnosed with PMR, on 15mg pred per day. Can I ask about social contact? My GP says social distance, keep to large, well ventilated indoor areas and go at quiet times. I'm due to go to an 80th meal with 30 people in a largeish high ceilinged room, a play in a not too big theatre where they have installed an air exchange system, and a weekend family break in a hotel. Do I just forget all of these? Any advice on what I can actually safely do? I realise that there is no definitive answer, but would really appreciate some guidance, as I realise that life will have to change to some extent. Not sure if I should just lock myself away for the winter. Thanks very much.

[piglette]

I must admit I tend to stay away from groups. I will not let a friend in the house who has not been vaccinated either.

[Bcol]

Good morning AshPen9, this does come down to totally individual decisions now, but in this household my OH and I are not really changing the way we have behaved during the last few months. For us that would mean avoiding any large scale indoor events. We have cancelled or rescheduled any theatre visits etc until next year. We do now visit two sets of our grandchildren who we do know are as safe and careful as we are. We wear masks if we have to go shopping but main shopping still delivered every week.

[Sunnyspells]

I think the question is whether you were vaccinated before you started to take the steroids. If there were 4 clear weeks after your second vaccine, you may have built up a good level of antibodies before you were diagnosed. I always err on the side of caution myself, but you do need to have some good times in your life too!

[AshPen9 in reply to Sunnyspells]

I was vaccinated, Sunnyspells. I was quite cautious anyway before my diagnosis, but, I would like to have a bit of a social life, within reason!

[DorsetLady PMRGCAuk volunteer]

GP has given good advice, and to be honest it’s what most of us should be doing anyway…..with or without PMR and even double vaccinated.

Life has to go on, but you need to be sensible about where you go, and who with, and continue to wear a mask indoors.

There is no need to “lock yourself away”…..but just be aware.

[123-go]

Hi. In my opinion your GP has given you good advice.

I have a supportive husband and we consciously keep to meeting people outside, don't go into others' homes and don't have them in ours. I'm a member of a theatre group but am horrified at the thought of being in close proximity to strangers.

This year we have chosen not to attend the funeral of a much loved family member, a wedding and a Naming Day. It was hard to turn down the invitations and as disappointing as it was we knew that we'd done the right thing for us and I had the support of family and friends.

You personally can be as careful as possible but will others around you be taking the same care? Will you feel comfortable being among large groups? Will your enjoyment be spoiled through being wary all the time? Can you guarantee that others will keep their distance? Only you can make your decision after weighing up possible risks.

Make the choice that is right for you.

[Kendrew]

I think it's all about what feels right for you and common sense. We don't need data or 'science' to tell us that the higher the number of people we come into contact with at any given time, the higher the chances of meeting someone who may have covid and contracting it from them. Being indoors in more confined spaces is definitely increasing the 'risk' and even an air exchange system won't necessarily stop you breathing in the virus if someone covid positive coughs in your direction.

Being outdoors is much safer but still not 100% safe.....remember Cheltenham races?.... and there is currently a significant rise in cases following the outdoor music festival in Cornwall.

It's all about 'risk', and only as individuals can we decide how much risk we're willing to take. I've just returned from 2wks near Looe in Cornwall. We had our own sea view apartment and stayed off grid mostly, and definitely avoiding the tourist hotspots and always eating outside if eating away from the apartment....but even then we got pinged by track and trace! We'd been sat outside having a cuppa, but back to back with another table. Doesnt take much to to be exposed to covid and you really don't know whether the stranger (or person you know!) close to you has it or not.

You have to have a life though, and you can do, but if you're vulnerable then you have to accept that measures have to be taken to protect yourself too.

I continue to wear a mask, avoid groups of people and indoor events, and family and friends visiting will take a lateral flow test the morning of their visit.

You will know what feels safe for you.

[Capspmr]

Are you double vaxed? I too recently diagnosed and take the view that if you feel up to it do it.

[123-go in reply to Capspmr]

Hello Capspmr. I've been trying to think of how to put this without sounding offensive or argumentative, but here goes.I feel that there's a fine line between feeling up to doing it and taking an unnecessary risk and I'm sure you recognise that. This is even more important when on Prednisolone as we don't mount the same response to the vaccination as healthier folk because our immune systems are suppressed by the drug. This leaves us more vulnerable, open to infection and likely to be more sick if we get Covid.

We don't have to be prisoners in our own homes by any means but should be taking extra care, e.g. limiting numbers when meeting in a group and avoiding close contact.

Of course, it's up to the individual and a matter of personal choice. I hope you understand my reasons for this reply made with the best intentions 🙂.

[Kendrew in reply to 123-go]

I agree completely. It's nice to think we can 'get out there' again but we're still immuno-compromised and we're still not able to know how much immune response (if any!) that we've mustered. I've just had two lovely weeks in Cornwall and proved it can be done safely. We took 'measures' though. We had our own apartment that I thoroughly sanitised myself on arrival (some of you already know that story!! 😄) We stayed away from the really busy, touristy places and went off grid mainly. Even then we got pinged but we'd been outside and back to back with another table in a quayside cafe, so wasn't too anxious and PCR tests came back negative. So it is possible, but it's all about risk.

You can't be too blasé because this virus is going nowhere yet and the next mutation could happen anytime and might not be as manageable as the current ones!

[AshPen9]

Thanks everyone, it's really kind of you all to take the time to respond to my question. I was fairly cautious anyway before my diagnosis, and your responses have made me feel that I can continue to do some things as long as I am ultra sensible. It might just be me but I am getting a definite sense of friends thinking that I am really going over the top in refusing invitations to events, and I have been questioning my own approach. It's nice to be able to get a view from people in the same position. Am I wrong to think that once I get down to a low dose I can be a bit less cautious, or doesn't it work like that? Thanks very much everyone.

[Kendrew in reply to AshPen9]

My rheumatologist told me when I was still working in school, that he wanted me below 5mg before he felt I'd be in a less vulnerable position to return to work. Even then, he said I needed to be very careful (not easy to execute when in a school environment!)

The general consensus of opinion was that you would be far less vulnerable on lower doses but still not necessarily as 'safe' as someone who wasn't on steroids.

As far as refusing invitations, etc, you have to do what feels comfortable and right for you. Even doubly vaccinated, 123-go expressed it perfectly when they said; ".....you don't mount the same response".

We are responsible for our own health & well-being and unless the day comes when we catch covid, we can't ever know how well our immune system will cope with it!! I personally don't want to find out, so anyone who doesn't understand my reluctance to 'join in' hasn't really tried to understand my health issues in my opinion.

I know it's not easy but staying healthy is far more important than someone else's opinion!

[AshPen9 in reply to Kendrew]

Thanks very much Kendrew, that's really helpful. I've decided to go to see a rheumatologist because I also have osteoporosis and high BP, so am quite concerned about what the steroids will do to me. Hopefully I will also be able to have a good general chat with him, and he will reinforce what you have all told me. Thanks for your help.

[Kendrew in reply to AshPen9]

I had osteopoenia pre-diagnosis, but a dexa scan 3mths after starting the steroids, showed osteoporosis. For this reason only, I reluctantly agreed to take biphosphonates. Without that evidence though I would definitely not have agreed to take them.If you are already on medication for osteoporosis, you may not need to do anything further just yet, but regular assessments of your calcium and vit.D levels are quite important. Some people have not had to do anything more than eat a bone healthy (calcium rich) diet and take vit.D and vit.K2 supplements.

Don't worry about the things that might happen. One day at a time....and deal with stuff as it occurs.

[AshPen9 in reply to Kendrew]

Thats definitely a motto that I need to adopt! Thanks very much.