tapering and vulnerability GCA

[carmadillo]

Hi again I have now reduced after 2 weeks on 60 to 40 for the next 4 weeks. My question is we booked a holiday with my partners family and their children in July by which time the programme says I could be on 12.5 ( hopefully). Does vulnerability decrease with reduction of steroids? We are unsure whether to unbook the holiday etc .

[PMRpro Ambassador]

Where are you hoping to go to? That is relevant too.

But don't count on it all going to their plan - GCA has its own rules and rarely gets the doctor's memo ...

[carmadillo in reply to PMRpro]

We are going to Devon in the UK each family have own lodges(as in me and my partner in one, the two daughters and their families in another 2) but assume there would be a lot of contact with the children. Yes I am beginning to think that whilst I like to be able to give definite plans to others they may have to start accepting degrees of uncertainty!

[PMRpro Ambassador in reply to carmadillo]

It does mean you can retreat it it gets too much for you but you will find you get tired much more easily than usual - and noisy children are VERY tiring.

[carmadillo in reply to PMRpro]

I think really my issue is whether I am vulnerable to infection as I am quite good at drawing lines in terms of my time and energy given to them. But these are young children going to school and nursery and I have been told at present to shield so really wonder do I become less vulnerable to infections as my steroid dose decreases.

[PMRpro Ambassador in reply to carmadillo]

The UK line is that children don't get Covid - but they do and although they may not be very ill they can still pass it on. Even with the vaccines, the evidence at present is that we don't creat a big immune response when on steroids.

If it were me I'm not sure what I'd decide. We have always gone on holiday alone and camping, very distanced even before Covid, and that is the only thing I would consider - though even that is unlikely given my husband's health. No small grandchildren in our family! Way past that ...

It isn't just the catching it consideration - when you are on pred they think you may get it more severely. And have less protection from the vaccine. I think it is still too early to predict what the summer will be like - but the scientists are already concerned about another spike as things open up. There are still hot-spots in various places - and you often don't know if someone has it but they are still shedding virus.

Have you had the vaccine? Before pred?

[carmadillo in reply to PMRpro]

I had the first vaccine before Pred my next one is due in first week of May ie thats the 12 week point anyway. I had AZ .Thank you this is the info I am looking at getting really and as you point out all this is a moveable feast. I think decisions will just have to go on hold for now

[PMRpro Ambassador in reply to carmadillo]

As long as there was 3 weeks between jab and pred I'm sure you have a reasonable response. Although it won't be 100% by any means, it should be heading for 100% that you won't get severe illness even if you do catch it.

[carmadillo in reply to PMRpro]

yes there was 3 weeks thanks

[DorsetLady PMRGCAuk volunteer in reply to carmadillo]

Just explain to your daughters beforehand that you may not (will not) be able to join in all their activities- not because you don’t want to, but because your illness won’t let you.

Impress upon them, some days you may want some time to yourself if you are tired, other days - say if you’re on a walk or similar, you may need to rest and watch while they walk!

If you tell them up front, hopefully they will be forewarned and accept the situation. My children did, and so did grandchildren.

The worst thing is to not say anything, and then wipe yourself out!

[carmadillo in reply to DorsetLady]

Thank you for this Dorset lady , I will have no qualms in setting boundaries believe me 🙂🙂!! My concern really is infection

[DorsetLady PMRGCAuk volunteer in reply to carmadillo]

Well hopefully by July the weather will be better (even in Pembrokeshire) so most of the time with the children can be spent outside.

If there are days that need to be spend indoors then just use your common sense, we all know what we need to do.......and may well have to continue doing it. So social distancing and masks may need to be employed! ....and remind the other adults in the party they need to be sensible if they are out and about mixing with other holidaymakers, even if you limit contact.

[jinasc in reply to carmadillo]

Where in Devon?

Check the nearest hospital just in case......you don't want one more than an hour away.

During 5 years of GCA........... I checked just as a precaution. Reason I live in a place which has 8 hospitals within a 25 mile range.

[PMRpro Ambassador in reply to jinasc]

And in Devon in tourist season that means a real hospital (not one like Bridport for example) within about 10 miles maximum. And yes, I know Bridport is in Dorset ...

[carmadillo in reply to PMRpro]

Whoops see above Pembrokeshire not Devon!

[PMRpro Ambassador in reply to carmadillo]

Not a lot in the way of hospitals and good rheumies out there ...

[carmadillo in reply to PMRpro]

thanks

[carmadillo in reply to jinasc]

Ha just found out its in Pembrokeshire Wales not Devon but thanks for tip will research if I go.

[jinasc in reply to carmadillo]

I love Wales and have been many times over the years but medical support forget it.

[carmadillo in reply to jinasc]

thank you jinasc yes most of my siblings live in Wales and I think may have mentioned this to me before

[jinasc in reply to carmadillo]

I came across a lady who lived in Cardiff and had both PMR & GCA. Eventually we got her to Kirwan in Bristol.

Talk to your siblings and ask them to be honest please.

[carmadillo in reply to jinasc]

I am lucky that my referral from gp literally took two days I was put on pred and fast tracked to Southmead in Bristol. I had symptoms for 3 months before I went to gp (I thought it was sinusses!)

[piglette]

Have you been vaccinated against Covid?

[carmadillo in reply to piglette]

Yes first one see above. AZ 12 weeks to second one in first week of May

[piglette in reply to carmadillo]

I would have thought a holiday in UK would be fine, you won’t be going on a cramped plane. You will have had both vaccines too.