2 Prednisone Questions

[PMR2011]

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!

[PMRpro Ambassador]

"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...

[DorsetLady PMRGCAuk volunteer]

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.

[MaryA_ in reply to DorsetLady]

Humm, were you told by your doctor about bracelet? I have had PMR since January of this year. Gone from 40mg down to 3mg and having a lot of side affects, now I’m up to 5mg and still pain in shoulders, knees n lower legs, shortness of breath , extremely tired. My thought after finding this site is tapering was much to fast. Can’t seen to get this across so therefore I’m getting depressed and not sure what to do. I’ve had breast ca twice but this PMR has been a beast!

[DorsetLady PMRGCAuk volunteer in reply to MaryA_]

No, surprisingly 🤔. It was my daughter in law’s suggestion. I bought 3 different silver chains (all quite delicate) to put on my ID tag - so it looked more like jewellery. In fact I’ve now discarded tag (although still got card in purse) and wear it just as a bracelet.

I would agree you’ve tapered much too fast, and even going up to 5mg may not be enough Try 7 or 8mg maybe - you need to get yourself pain free. Plus your adrenals are probably struggling so that’s why you’re tired and depressed.

As we always remind people just because you're on Pred and begin to feel better it doesn't mean the PMR is gone. All the Pred is doing is controlling the inflammation caused by the underlying PMR- and that's a serious illness. Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it. Time mends, along with a bit or a lot of TLC.

As long you’ve got PMR you need the correct amount of Pred for you to manage it - no point in being on too low a dose.

[MaryA_ in reply to DorsetLady]

Saw my GP today and I think it went well. He suggested I go up to 20mg and slowly taper from there. I told him about the “Dead slow and nearly stop reduction plan”. He’s all for it. Am praying that this will work!

[DorsetLady PMRGCAuk volunteer in reply to MaryA_]

Hi,

What a sensible GP! I’m sure it will work. As we’ve all found out going slowly really does work best.

Good luck.

[Lejazzhot in reply to MaryA_]

Hi. What is the dead slow tapering routine? Im new and haven’t come across this terminology? Thanks

[PMRpro Ambassador in reply to Lejazzhot]

healthunlocked.com/pmrgcauk...

There are other version available but this is the one I worked out years ago and which many people have used successfully. It is in use in a clinical trial and the people who used it have said it is better than other approaches they had tried previously.

By the way - if you post a reply in the middle of a very old thread it is quite likely not to be seen, people join and leave all the time and won't get notifications. Always best to start a new thread.

[PMR2011 in reply to MaryA_]

Maryanne you have found the right site to assist. I would agree, your taper seems very fast. I was diagnosed with GCA in May this year (after having PMR for 6 years!). I am only down to 17mg.

Are the symptoms you describe those you had at the beginning of your diagnosis? If so you need to increase back to a dose where you do not have the symptoms (or they are very manageable). Then stay there a while (at least weeks) before attempting another taper. Then, reduce no more than 10% of your current dose. therd are several resources on this site to assist with tapering.

Hang in there, you'll feel better once your symptoms are sorted and the disease brought under control. Then will have to be patient for the disease to run its course.

[PMRpro Ambassador in reply to MaryA_]

Yes, I think your assumption that your tapering was much too fast is well justified.

Have you access to a different GP? Are you under a rheumatologist?

Look at this for a more sensible reduction in GCA:

rcpe.ac.uk/sites/default/fi...

They would have you down to 10mg by now but would have started higher. But there is no virtue in not being on enough pred - and if you have inflammation building up you will be back to a much higher dose again sooner or later.

[MaryA_ in reply to PMRpro]

PMRpro, I went back to my GP with information I got from this Webb page and together we came up with a plan. So relieved he really listened to me. 🤓

[Lejazzhot in reply to PMRpro]

Excellent article. Thanks for sharing

[SnazzyD]

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.

[Jackoh]

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

[PMR2011 in reply to Jackoh]

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.

[HeronNS in reply to PMR2011]

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/

[PMR2011 in reply to HeronNS]

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!

[HeronNS in reply to PMR2011]

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!

[PMRandRA]

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.

👍🌸

[GCA1947]

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