Prednisolone cards

I'm in the UK, in Scotland Judith and both our GPs and pharmacists have them. When you're put on steroids they issue you with 1 or 2 and you fill in doctors and consultants details and the name of the steroid you've been started on plus the date and the dosage. Then as the dosage is increased or reduced the date that happened. Then if you need more cards you just ask at the GPS or pharmacy for them. I know you're meant to Carry all the cards with you for so long after you come of steroids but don't know how long for. I think it's in case you are rushed into hospital and your records aren't checked so you're not treated appropriately. Here we're also advised to wear a medic alert medallion or bracelet at least engraved with the word steroid, and then if you collapse paramedics will search to see if you're wearing an alert and look for the cards. If you don't have the cards where you live you could always do you're own chart on computer using thin card and if you have Amazon online retailer you can get the medic alerts, they sell lots of different types, from there. Unfortunately I'm off the prednisolone because I was wrongly diagnosed with polymyalgia. Even though my bloods where coming back as clear of inflammation. I am in so much pain I pressed the GP to refer me back to the rheumatologist, and finally saw him two weeks ago when he confirmed it's fybromyalgia I have which can't be determined by blood tests but just by a thorough examination by an experienced rheumatologist. There had been some doubt in his mind when I was first referred to him by the GP but he had gone along with the GP because the GP was so insistent it was polymyalgia. Unfortunately the rheumatologist has now passed my care back to the GP who can't, or is unwilling, to put me on strong painkillers, the only help people with fybromyalgia can get

Porgi - are YOU sure it is fibromyalgia? Did pred deal with any of the pain?

There are a lot of overlaps between PMR and fibro and it wouldn't be the first time even a rheumy had got it wrong. Before I got a diagnosis it was actually difficult to say whether the trigger points I have, so beloved of the fibro proponents were fibro or PMR - and since then I have learned that many are also caused by myofascial pain syndrome which is commonly found alongside PMR. PMR causes tender muscles too - even if some rheumies don't think so.

The ONLY true difference is that PMR responds to pred, fibromyalgia doesn't. However, some patients with fibro respond to pregabalin which was designed for fibro, gabapentin is another medication sometimes used in fibro.

The rheumatologist is certain it's fibromyalgia and my gp's wife, also a doctor, is certain it's fybromyalgia. I do have very very painful sore spots as well as myocardial pain caused by stress. I'll make a note of the drugs you mention that help with the pain because I've got to have more than the paracetamol he's told me to take. The problem with the doubt as to whether its polymyalgia or fibromyalgia is that I didn't have the classic symptoms of polymyalgia in the first place, and nothing showed on the blood tests even though I was in constant agony. I did wonder if I'd had polymyalgia and then got fybromyalgia but was told no, it had been fybromyalgia all along ,which is why the GP was able to get me off Prednisolone in under a year. The rheumatologist said it just isn't possible and two years would be the minimum he'd expect. Anyhow going thanks for your suggestions, I'll try get a referral back to the rheumatologist and ask him about the drugs you suggested.

If the pred worked to relieve the pain at first - it isn't fibro. If you have pain now and pred relieves it - it isn't fibro. And a trial for a week of pred would show that. If it doesn't work you can stop without tapering. 

Up to 20% of patients DON'T have raised blood markers. 

Hi Joanne thanks for suggesting tai chi I'll see if there are any classes around here but I won't be surprised if there aren't many I'm in the Highlands of Scotland.

Hi Joanne have found some Tai chi beginners classes near me so have emailed for details of them. Theresa re two locations so hopefully I'll get into one

Tai chi is an excellent activity.  I've heard that there are different ways of teaching it, so it's wise to do a bit of homework - find out from the instructor if s/he is aware of PMR and how they instruct people who may have some minor disability such as PMR can cause.  Because in the West Tai chi is mostly targeted at older people they should be quite gentle, but it's good to know if they are careful to make sure the students are avoiding doing things which could be stressful, certainly at the very beginning.  Like yoga, you only go as far as you can go, never do a deep lunge, for example, unless you really can and also can get up from it again in a smooth motion. 

Hi Jennifer. Are you in Britain? If so your GP or pharmacist should have supplied you with special steroid warning cards to carry. The idea is you fill in your details, your GP details and each reduction or increase in steroid within the date it happened, and you carry all the cards with you always for a year after you come off the steroid. It's so if you collapse or are in an accident paramedics and A&E doctors will know what drugs you can safely be given. The cards used to be blue but I think they've changed recently to yellow. Also some people wear a medic alert medallian or bracelet. I don't always now I'm off the prednisolone, but I should. I don't feel well even though I'm off the pred but have recently been informed by my rheumatologist that the diagnosis of polymyalgia was wrong and it's fibromyalgia I have. The rheumatologist had allowed himself to be guided by the Gp, even though he'd doubted it initially and just passed my care over to the GP. I had to press to get referred back because I was in so much pain and theblds for inflammation kept coming back clear.

Hello Porgi. Yes I am in the uk and never been given a card !! I will mention it to my doctor when I next see him. How odd that he never mentioned a card. Oh my goodness to be diagnosed with polymyalgia and then told that you have fibromyalgia the two must be very similar. I am still in some pain a few week ago I went down from 10mg to 9 mg and the discomfort started but my doctor won’t let me go back up to 10 mg until  I have a blood test ( next Monday ) he says that inflammation will show up on my blood test , “hope so “I have osteoporosis that’s why he doesn't want me to go back up with the Pred.  

Hi Jennyrose, I think it is more a case if asking for a card. My pharmacy dragged one out of a rather dusty high shelf! You can always print your own there are samples on the internet. I wear a bracelet too as I though if I had an accident they would see that sooner! 

Hello Ptolemy. Thank you for this information. I’ll ask at the pharmacist tomorrow ! A bracelet might be better where do you get them from ? Thank you  😃

I got mine off the internet. There are quite a few to choose from.

Thank you. I have just seen some on Amazon Xx

I bought mine from a company which for a one time payment will maintain a lifetime online health registry, accessible by a pin # on your bracelet.  I keep my pred dose updated, and if I had other ailments I could have a record of them also.