Blue Steroid Record Card

[GCA1947]

I'm new here, where can I obtain a blank blue steroid record card I've used up three in 2.5 years. One that I'd like to be editable on screen before printing.

[bowler]

I think you can only obtain a steroid record card from your GP or pharmacist, ? I use a pencil to fill in mine so I can erase the dose as it changes, I also keep a record of my dosage in a diary. I have been on Prednisolone for 17 years so I would have needed quite a lot of blue record cards if I filled them in ink.

[GCA1947 in reply to bowler]

Thanks for replying. The big TESCO store at Martlesham has stopped supplying and my local Pharmacist at Martlesham Heath has never supplied them. I'll try my GP but am not hopeful. Anyway you've given me an idea.

[PMRpro Ambassador]

The NE support group site had their own steroid record cards - I assume they still have some, they are on the shop part of the site:

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

[betty1943]

You an get them from Boots Chemist or if you join PMRGCAuk, which is well worth while and you would be supporting the work being done for both these probs. they would send you one.

Don't know about the editable on screen part, think you will have to design your own. Good luck.

[GCA1947]

Dear Betty, I am a member of PMRGCAuk I certainly bought the book PR & GCA a Survival Guide by Kate Gilbert when it was offered to me. It's the high dose of steroids for past 2.5 years giving me Osteoporosis for the second time that's spurred me into joining HealthUnlocked. Luckily I've only got GCA plus Kleinfelters Syndrome and Osteoarthritis.

[betty1943 in reply to GCA1947]

The record card came with the last news letter.

[Hidden]

GPs Receptionists always look a bit blank if I ask for a new one & the last Pharmasist I asked looked totally bewildered!

I used to keep a Spreadsheet on the iPad but kind of lost interest in it when I started chemo for Breast Cancer!

But I think making & printing your own isn't a bad idea, just get some blue card to print it on or as someone else had said they have them in the NE Group see PMRPro's reply.

Best Wishes

[GCA1947 in reply to Hidden]

Mrs Nails, Although I thought it a good idea at time the editable blue card doesn't exist that I can find and I haven't the skill to design my own. Considering how important it is to tell the medical profession we've got this awful condition one would think the blue cards ought to be provided.

My GP is trying but he doesn't know much about GCA. His partner thought I had Neuralgia and it was only the insistence of my late wife (Janet died 26/04/16) that an neurological appointment was arranged.

DexaScan last Friday 02/09/16 confirms Osteoporosis is back as I've lost 1 inch in height since 2014 scan. Luckily I've got some blue card and have copied a PDF off the internet. I will try NE Group their record and card seems the bees knees.

Best wishes

Colin Elmes

[Hidden in reply to GCA1947]

Hi Colin

I'm sorry to hear about the loss of your wife Janet, it's a lot for you to cope with at this time.

I've just had a look at the Record Card on the NE Website & it looks good. I need to get a Medic Alert Disk as my Rheumatologist says l'll need to stay on 5mg indefinitely, though I'm currently back up at 7mg

Sorry to hear about the oestoporosis too, are you on treatment for that? I'm currently on a Zolendronic Infusion every six months following my Chemo as a prevention for reoccurrence in my bones, I was on Alendronic Acid prior to that, I have oestopenia in my lower back & I'm actually off to get that Xrayed this morning.

Take Care 💐

[GCA1947 in reply to Hidden]

Dear Mrs Nails,

I was born with Klienfelters Syndrome which mucked up my physical development and gave me a curved spine at about 14. The kleinfelters was diagnosed in 1996 when I was 46 when I'd developed Osteoporosis, had 7 rib fractures and broken a bone in my left foot. 20-years of Testosterone Replacement Therapy reversed the worst of the osteoporosis in fact I recovered from it in 2000 and was then at Osteopenia stage where I stayed until December 2013 when I developed Great Cell Arteritis and discovered the joys of an open head temporal biopsy and a high dose of steroids. My CRP readings has been like a yo-yo this year but I suspect it's been because of the stress of Janet's ill health and then her death on 26th April. I don't regret her death she had suffered terribly and is now at peace.

Nothing is being done about the osteoporosis because it is so recent. My Rheumatologist has been trying to get me on to Alendronic Acid but I've been fighting this because Janet was on Didronel and it softened her gums making tooth extraction problematical. I've only got 17 teeth left and 4 of them are crowned. Now the O. is back I will listen to what my Kleinfelters Consultant says when I see him at the end of September. I'll Just get the bi-annual echocardiogram over (one of my heart valves leaks with every breath), and then I will have done all the checks necessary.

Only a potted history but gives you an idea of the awfulness of what I've had to put up with. No doctor/consultant can explain why they can't find a maintenance dose of prednisolone for me.

I will be buying a record card from NE Website, as I went into Mart Pharmacy and they still haven't got any.

Best wishes

Colin

[Hidden in reply to GCA1947]

Dear Oh Dear, Colin

You have had a tough time of it, I hadn't heard of Klienfelters Syndrome but just had a read up on it on the NHS Health Website. 🙇🏻

So an autoimmune condition was almost a promise on top of the osteoporosis, I hope they can find a settled dose of the steroids for you to keep the symptoms at bay & to get the osteoporosis under control or prevent it getting any worse.

I have only had the one infusion of the Zolendronic Acid so far number two next month but it was infinitely preferable to the weekly AA & the early morning routine taking of taking it!

Take Care & remember we're all here if you need some support or encouragement.

Take Care 🌻

[GCA1947 in reply to Hidden]

It is nice at last to find I'm not alone and there are others with similar conditions who know what I've been through and are going through it as well. I will keep you informed when there are any developments.

I think we can put the blue card to bed as I've ordered one from North East Support.

Thank you all

Mr Elmes

[PMRpro Ambassador in reply to GCA1947]

Should have thought before - given your very complex medical history have you thought of a MedicAlert bracelet? They cost a bit more but aren't that expensive and give a contact number where your entire history is available to medical professionals on request. You update it as required.

Another option is to carry a USB memory stick with all the details, one form of the medic alert systems does that but I know others have done it themselves.

All that is important is it is somewhere easy to find - that applies to the blue steroid card anyway. The bracelet is the best idea - it tends not to get separated from you!

[GCA1947 in reply to Hidden]

MrsNails, sorry if I've inadvertently spelled your non de plume incorrectly on my replys. I'm very interested in your zoledronic acid as my fear of a curved oesophogus attached to my curved spine will not be suitable for Alendronic Acid tablets. An infusion would be much more suitable for me as with my fractured spine bone that makes eight fractures all together, with the seven that occurred before 1996. Did your consultant just suggest it or have you had multiple fractures like me?

Best wishes

Colin

[PMRpro Ambassador in reply to GCA1947]

"No doctor/consultant can explain why they can't find a maintenance dose of prednisolone for me"

Possibly because they have tried to get you to reduce too far or too fast for the activity of the autoimmune part of the disease? That is the primary reason for flares occurring. There is no one-size-fits-all dose or time of reducing - slowly and carefully with small steps works but many doctors are so scared of pred they rush the patient off it and in the end it means the patient has actually taken more.

The bioavailablity, the amount of pred we absorb, varies between 50% and 90%. So one person on 20mg is getting 18mg-worth of pred. Another on 20mg is only getting 10mg-worth. Rather a difference.

[HeronNS in reply to GCA1947]

You have had a difficult journey. One thing I wonder, given your history, the bisphosphonates don't seem like the safest choice of bone med for you. Would your doctor have any other suggestions. There is something now, I'm afraid I forget which one it is. which instead of killing off the osteoclasts actually preferentially encourages the osteoblasts which build the bone. I have no idea if this is a better idea or not, but I'd ask a lot of questions before accepting any of the bone meds to make sure you are getting the best one, if you eventually do go that route. All the best! 💕

[PMRpro Ambassador in reply to HeronNS]

Are you thinking of Forteo Heron?

Teriparitide: "Teriparatide is a recombinant form of parathyroid hormone consisting of the first 34 amino acids, which is the bioactive portion of the hormone. It is an effective anabolic agent used in the treatment of some forms of osteoporosis."

It's bio-identical so avoids the bisphosphonate problems as well as acting differently. It builds natural bone.

[HeronNS in reply to PMRpro]

Could be. Unfortunately it's the drug which comes with a risk of osteosarcoma, among other unpleasant things. Can't win....

fda.gov/downloads/Drugs/Dru...

[HeronNS in reply to GCA1947]

Like PMRpro I think a bracelet would be a good idea. Try this site - one charge, no monthly fee, and an online account you can keep updated, available using a PIN on the bracelet to any medical first responders:

universalmedicalid.co.uk/

[Marcy47]

I got a blue steroid card from Boots Pharmacy, but they had to hunt around for them. Don't think they get asked for them very often. My GP didn't have any.

[xdbx]

I just printed my own onto blue paper from the Imperial College NHS Trust website - imperialendo.co.uk/Steroid%...

They give clear instructions to print onto A4 paper and fold in four. It's perfect!

[PMRpro Ambassador in reply to xdbx]

Why don't you start a new post for this info - few people will see it here on this quite old thread and it is very useful information.

I would - but don't want to appear to steal your thunder

[xdbx in reply to PMRpro]

Great idea! I'll get onto it...thank you.

[GCA1947 in reply to xdbx]

Dear xdbx

Thanks for this, I'll certainly have a go. The local pharmacy attached to my surgery said that as the NHS had patients records on a database the need for the patients to maintain a record on the blue cards was unnecessary. I've had so many changes of dosage in the nearly four years I've had GCA I've filled up three cards and am now on my fourth. I would feel much more secure knowing that I was maintaining my own records and being able to produce my own card would save the futile searching through pharmacists near Martlesham, Suffolk. Tesco used to do them but suddenly stopped. Martlesham Heath has never stocked them. Most surgery staff look at you as though your mad, but then I suppose GCA is very rare especially in men.

So thank you once again

I've got a good stock of blue paper I'll start printing tomorrow.

Regards

Colin

[PMRpro Ambassador in reply to GCA1947]

It's the assumption that the paramedic picking you up in the middle of the Yorkshire Dales or wherever can get you on the database that gets me!!!!!!