International Space Shuttle: Good Evening to fellow... - PMRGCAuk

PMRGCAuk

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International Space Shuttle

17 Replies

Good Evening to fellow sufferers!

We are in North Wales and have just watched the ISS go over. It made me think how many of you might be watching and I send my best wishes to all who help support and advise us on this journey of our own.

I am nearly at 3mg now and feeling a bit tired and hotter than usual so might stay at 3mg for a few weeks longer, Nothing major but I am trying to go carefully and not rush!

17 Replies
granny-b profile image
granny-b

We are near the east coast in Norfolk. We don't always watch but get the nasa emails and watch when we can. I find watching quite awe inspiring.

I can't get below 5mg, been about 3 months of outchies.

jinasc profile image
jinasc

You might like to ask your GP to arrange a Synacthen test (use your search engine). When you have been on pred for a longtime and you have aged a bit, you need to see if your adrenal glands have kicked in and are getting on with producing your natural cortisol.

Remember how you have to carry your Blue Steroid warning card for 1 year after stopping pred...............that is one of the main reasons why, as it can take up to 1 year for them to become fully functioning once more.

in reply to jinasc

Thanks, I will investigate this tomorrow.

Sandy1947 profile image
Sandy1947 in reply to jinasc

In the US. No one told me to carry a Blue Steroid card. Guess I should contact my Dr. Did cross my mind to keep something in my wallet or phone. Thanks

jinasc profile image
jinasc in reply to Sandy1947

In the States and the UK, medical alert bracelets come in all sizes, shapes and metals - I did like the look of the gold but had better things to do with the cash.

We even imported some for our members as then it was cheaper to buy them in the USA. No longer is it cheaper - although they were all made in China and we have them in the UK as well. It was still cheaper and that was with import duty.

So wander down to your pharmacist or look on internet.

I think Blue Steroid Alert cards are in the UK only.

Sandy1947 profile image
Sandy1947 in reply to jinasc

Thanks. I prefer the card to ugly jewelry! I asked my pharmacy and they said they had nothing. I’ll try to google. Did you get yours at the pharmacy?

Rugger profile image
Rugger in reply to Sandy1947

You'll see there's plenty of information online and you could print one or just write your own, to fit in your purse.

I saw one at imperialendo.com

jinasc profile image
jinasc in reply to Sandy1947

Yes Pharmacists should have a supply, but they can be like gold dust.

It is inadequate so PMR&GCAuk North East Support (a reg charity) designed A Steroid Reduction Medical Record booklet, which enables you to record all medications, dates and signatures of who prescribed them. It was done with the help of the Lead Pharmacist and a couple of Consultants in their local hospital.

it also comes with an alert card to carry with you.

pmr-gca-northeast.org.uk/in...

It is not free it costs £1.53p which currently includes P&P.

knit1purl2 profile image
knit1purl2 in reply to jinasc

I'm also in the U.S. I have made a list of my meds and history and on the computer as well as my husband's. We each carry both copies with us at all times. It has been a big help.

Sandy1947 profile image
Sandy1947 in reply to jinasc

Thanks!

daworm profile image
daworm in reply to Sandy1947

I'm in the states also, never heard of the card..I told wife to make sure in an emergency that people know I'm taking pred and what the current dosage is..

HeronNS profile image
HeronNS in reply to daworm

I bought a bracelet. There are very attractive ones available now, many different styles. It's not medicalert, it's another international company. You get an online account where you can keep all your medical information up to date, comes with cost of bracelet, never any more charges. Think it's called medicalid, I'll look it up.

HeronNS profile image
HeronNS in reply to HeronNS

canada.universalmedicalid.com

Available in Canada, USA, Australia, etc.

Sandy1947 profile image
Sandy1947 in reply to HeronNS

Thanks! I keep medical info in my I phone which can be accessed in an emergency without using the code. I need to add Pred to the list!

SheffieldJane profile image
SheffieldJane

How exciting! Good omen!

Jackoh profile image
Jackoh

Well done for getting to 3 mg!!! Looking forward to getting there. Isn't a race is it ? Advice re test for adrenal glands seems like a good idea to me.

daworm profile image
daworm

I have watched in the past, using the excellent website that tracks it and shows you where it is now and were it will be during the next 24 hrs..strange watching that bright light go cruising overhead...we forget about that being up there!

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