2 Prednisone Questions

Thanks all for this very informative and warmly supportive forum! Tho I don't post much I appreciate waking in the morn (am in the States) to the newest posts.

I have heard and read about "lifetime dose" of Prednisone. Can someone help me understand what that means in concrete terms and why it matters?

Also wondering how many have an alert (bracelet or such) that we're on prednisone and if I should do something that way?

Have had PMR for 6 years which was managed well at 4ish mg until diagnosed with GCA this May. Now on 40mg!

Thanks again for your advice!

10 Replies

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  • "Lifetime dose" or cumulative dose is a term I think they like to use because it also covers the fact that many patients are on short courses of pred but repeatedly - and it seems to be the total dose you have had, never mind the time scale, that concerns them in terms of side effects. For example, the more you have had, the greater the risk of osteoporosis or fractures. And hence the desire to get us all to the lowest dose possible as quickly as possible. But they also seem unwilling to accept the fact that everyone is different - no bone density problems for me after 8 years...

    In the UK there is a small blue steroid card that patients are supposed to carry - even the GPs seem unaware of it sometimes! I have a card with my cell phone listing medications and I never go far from home without 24 hours of tablets in a dosette box. I often recommend a medic alert bracelet but I don't practise what I preach - I hate wearing such things...

  • I have a bracelet which I still wear although off Pred for 8 months and I still carry Blue Steroid card - just so anybody knows my history should the need arise.

  • Hello, I got some rather nice coloured 'dog tags' from Amazon which I wear when I go out. I got them inscribed by the seller with emergency contact details and steroid use alert. They are big enough to put on a sticker with the current dose. It cost about £5. I think I'll get a bracelet too for when I start to go out again and want to wear something a little less utilitarian. My card is in my bag but my bag is often not with me.

  • Hi PMR2011,

    I have a blue steroid card and after being diagnosed with GCA after having PMR for just over a year I decided that as I was in for the long haul I would get a medical alert bracelet. All the ones I saw on line looked very sturdy but I didn't really like them! My thought was that as I have to wear this every day I might as well get something I'd like to wear. So I went onto the site "Etsy", which if you're American you may be very familiar with. There I bought a very fine but strong, gold coated bracelet which has a thin gold band on a chain. On the back of the band gives my name, the fact that I am a steroid user and an emergency telephone number( my husband's). It is quite elegant but also does the job and I like wearing it!! Job done!!!

    Jackie x

  • Thanks Jackie,

    That helps with what to say on it too. I like wearing bracelets so will have to look for a suitable complement to the wardrobe! ETSY is a good idea.

  • You might want to consider Universal Medical ID. I bought my choice of bracelet (silver, though I could have got gold!) they have a lot of styles. The beauty is when you buy the bracelet you also get a lifetime link to a site where you can enter and keep up to date all relevant medical info, contact info, etc. There is never any further charge, unlike Medic Alert where you pay a monthly fee which could be useful for a short term illness. My bracelet has a pin # on it which a first responder can use to access this account, as well as the reason for the bracelet, in my case simply "Prednisone" on the inside of the bracelet. I didn't get anything engraved on the outside. We don't have anything like the UK's steroid cards where I live, so this covers everything; I wear it every day, and I was told that it doesn't look like a medical bracelet, just a piece of jewellery. universalmedicalid.com/

  • Thanks for the tips and the website. There are certainly many to chose from and much more stylish than I remember they used to be!

  • I've never regretted the cost of my bracelet. I wear it threaded through my watch strap, so it's very discreet, but because I selected a rather pretty chain I get some pleasure from it. In a way it was a little gift to myself, a compensation for having to be on this wretched PMR/pred journey!

  • PMRpro has more than adequately explained "lifetime dose"

    Personally, I do wear a neck chain with a tag explaining what I am on (loads, not just steroids) . In the event of an incident where I am unable to speak, this tells medics everything and will hopefully prevent errors, there is also a number to call for more info.

    👍🌸

  • SnazzyD

    I've worn a bracelet since HeronNS introduced me to Universal Medical in December 2016 and I feel much happier knowing that my complicated medical history would be accessed by paramedics in the event that I couldn't speak. There is no one else to tell them about me know. What is so good about Universal Medical is that they have a US Branch as well as one in the UK. I'd never worn bracelets before 2016 and this one is behind my watch so its hardly noticeable, but shows on both sides what my conditions are. I ran out of blue cards and Tesco Pharmacy stopped supplying them. Local pharmacy has never stocked them so in the end I made my own and it lives in my diary. The website of Universal records all your conditions and is very comprehensive and I highly recommend it.

    Colin

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