PMR Journey

[Abbey17]

Reading everyone’s posts every day made me think about my diagnosis just over 3 years ago. I know we have all experienced such a mixed bag of medical care. But looking back mine seemed to have been so played down- stiffness and pain and steroids for up to two years. Hmm determined to be off them before... if only I’d known what lay ahead. Been a nightmare! We all know don’t we?! I have said before I now have an amazing proactive GP. and having recently successfully reduced (finally to the ever elusive 5 mg) I’m now on a very slow taper to 4.5mg . This forum has been a Godsend to me ( I know I don’t write as often as some) but I read it every day and read all our struggles and successes. I’m no longer so complacent about reducing- yesterday I received a letter and a steroid card which I have to have with me at all times. Have you all got one? Apparently we all need to carry one, (sure I should have had it from day one? Unless it’s a new thing) think I might get a steroid bracelet in case of emergency. Anyway- your all amazing and thanks for al the advice especially re tapering which has been a Godsend to me.

[Horsewhisper]

Bravo Abbey! Well done for getting to 5mg and for acknowledging our health journey struggles. I too get a huge amount of support from this forum, good luck with your steady taper!

[Koalajane]

Yes, I have a steroid card and a bracelet. I got my bracelet from Amazon. My pharmacy gave me my steroid card.

[PMRpro Ambassador]

A new steroid card has been brought out by the NHS - really not sure what happened to the old little blue one that many GPs didn't know existed and even some pharmacists were not much better. I can only assume there had been a few incidents where patients without cards had had adrenal crises for some reason. Mind you - I don't think a lot of doctors have the slightest idea how much at risk their patients on long term pred may be.

england.nhs.uk/2020/08/ster...

[Hidden in reply to PMRpro]

I'm with you on that one. I am not being nasty on my next comment but my local Doctors do not appear to have a clue. I have never in my nearly 7 year journal been called in for a blood test regarding monitoring my PMR. When I attend for some other problems that crop up from time to time, none of them ask how I am getting on with PMR. When I have had flares most of them say the PMR has come back, start again on 15mg my only real guidance is from this forum and have learned how to manage a flare. Thank god for the forum and the members who know what they are talking about ! You know who you are and thanks a million 😀

[PMRpro Ambassador in reply to Hidden]

I wonder if they tell RA patients having a flare that their "RA has come back"? If they know it doesn't go away, just isn't being managed ideally, why can't they work it out for PMR?

[Hidden in reply to PMRpro]

Yes, exactly.

[Hidden in reply to PMRpro]

Something strange going on, managed to edit something this morning after 2 attempts. 15.14 today can only see Report after your pm blog, no reply button!

[PMRpro Ambassador in reply to Hidden]

I can see them on all posts - was it always to the left of the line?

[Hidden in reply to PMRpro]

Reply box was missing completely, just had the report 'box'. This blog is obviously working, maybe they have been working on it.

[PMRpro Ambassador in reply to Hidden]

They certainly claim to have been!

[Hidden in reply to PMRpro]

Yes always on the left

[Greensleeves in reply to Hidden]

Hi Pastit, same with my GP practice. It took a locum to refer me to a rheumatologist after I’d successfully tapered from 20mg to 0 and became very unwell.

She put me straight back onto 30mg and contacted a rheumatologist .

It was a sports psychotherapist who initially diagnosed PMR in the summer of 2012 , my GP said it was wear and tear .

But this is my “go to” place for advice and knowledge.

The lovely people on here are living it or have experienced it .

[Hidden in reply to Greensleeves]

Similar story to mine!

[Deyazlex in reply to Greensleeves]

Hi, I’ve had PMR for about 5 years, realised quite early on that this might be the problem so went to my GP who immediately organised a blood test. She was about to go on holidays so left me a note with instructions. Started on 15mg reducing down gradually. Found 2mg my comfort level. But I monitor it myself, going up to 3mg and down to 1mg as and when. No problems so far. Luckily don’t have pain just feelings of having ‘over exercised’, sore muscles.

Guess I’m one of the lucky ones.

[diana1998 in reply to Hidden]

Hear hear! 👍

[Suffererc in reply to Hidden]

Wow that is awful. Thank goodness for this forum 😃

[Hidden in reply to Suffererc]

Agreed.

[Flosy in reply to PMRpro]

Hi.where do you get the new cards from.i got the little blue one.and are the brackets special ones.what do I look for have they got a name to them.sorry about spelling.

[Abbey17 in reply to Flosy]

I received the card and the letter through the post from the GP - it seems every will be getting one but worth checking x

[diana1998 in reply to Flosy]

From Dr's surgery

[Telian in reply to Flosy]

Hi Roses, if you’re a member of PMRGCAuk you get the blue card on registration. You can buy medical bracelets/necklets from any pharmacist.

[Flosy in reply to Telian]

Thank you very much.

[Daisymay in reply to PMRpro]

Thank you for the link. No one has ever offered me a card to carry to say that I take steroids, not the Dr or pharmacist. To be honest no one has ever called me in for a blood test to check for inflammation levels except the first diagnostic test that I had and one done by my rheumatologist. I ask for them myself sometimes but have to put a case for doing so. No tests, no scans, just a call a few months back from rheumatology to check how I was and that was not from my consultant . I look to this site for advice and judge for myself whether I need to take any action. Thank you!

[Abbey17 in reply to Daisymay]

That’s not good my GP calls me once a month and I have bloods every 2 months - it seems so many health professionals are not educated enough about it or the debilitating effect on people’s lives

[PMRpro Ambassador in reply to Daisymay]

That is appalling - at the very least a patient on long term pred needs to be monitored for developing pre-diabetes. If you care (I don't) cholesterol also needs looking at. BP and weight should be monitored too. What good it does is questionable since while they will hand out statins or metformin like sweets they don't know any other way of managing pred side effects.

[Daisymay in reply to PMRpro]

Yes you are right. There are other issues other than inflammation levels to be looked at. I read of others having check ups for all sorts and realise that I am not getting the same level of care and I need to address this. Thank you.

[Suffererc in reply to PMRpro]

I have the new one, sent in the post. My pharmacy also offered me a blue one last week, but I already have one . So still in circulation 😊

[YogaG]

I’ve got the bracelet. If you’re walking etc etc you probably won’t have a steroid card on your person. I always wear this bracelet, which also includes my name and hopefully one day I won’t need it any more.

[Abbey17 in reply to YogaG]

Thank you it’s a good idea I’m definitely going to get one

[HeronNS]

I got a bracelet from Universal Medical ID. It may be more expensive than some but the advantage is with it you get a free lifetime link to a site where you can enter contact info, your medical condition(s), medication including dosage. This is accessed by first responders through a PIN engraved on the bracelet. There's also a wide choice of styles, and prices, for those who care about such things, as I do .

universalmedicalid.co.uk/

[Abbey17 in reply to HeronNS]

Oh really I’ve not heard of that - thank you. Worth looking at.

[HeronNS in reply to Abbey17]

I bought a silver one. It was at the time rather more than I should have spent but my thinking was as I hardly ever bought or wore jewellery, and this was something I'd be wearing every day for a couple of years (now over five years ago!) I was worth it 🤴. I did refrain from springing for the gold one 🤣. But there are so many styles I'm sure there's something for everyone.

[Abbey17 in reply to HeronNS]

If your wearing all the time you need to like it and in the worsts of L’Oreal ‘we’re worth it’ 😁

[HeronNS in reply to Abbey17]

Exactement!

[Pr0jection]

Glad everything is going well for you. All the best

[maxistar]

Hi

As you I can’t praise this forum enough, it has helped me to understand my condition far more , I feel I am sharing my journey with others and there is always a helping hand of support , to talk to that understands, thank you to all that take their time to share their experiences ❤️.

I have since reading this now set up my emergency details on my I phone , so my health details can be accessed by tapping the medical id when locked. I have also put a symbol on my Lock Screen page to alert , I’m not a jewellery /watch person . Again with sharing you are always learning

Well wishes to all on their journey with PMR.

[Lacelady in reply to maxistar]

Hi Maxistar.

Am I right in thinking you are in the USA ? I tried adding my medical details to my iPhone like you suggested but it seems that it only applies to the USA.

I can add my emergency numbers but I cannot find how medics can access it when locked.

As you will gather I am not brilliant at this sort of thing.

I think I will have to go to my son I am sure he can do it.

Thank you for your help.

[Abbey17 in reply to Lacelady]

I'm in the UK and have it on my IPhone. You can do it in settings or download an App which you can put your details on.

[Lacelady in reply to Abbey17]

Thank you for your reply. I will look into that.

[maxistar in reply to Lacelady]

Hi I’m in the UK , and I think Abbey17 has kindly replied , sorry I only get to check this in a morning , hope you are able to do this , I used the app - health a white square with a red heart which was a preinstalled app ,

[Lacelady in reply to maxistar]

Maxistar Thank you for replying. I have added some information on the health app like you suggested and in settings. But I cannot see how a health worker could access the information when the phone is locked.

[maxistar in reply to Lacelady]

Hi On medical Id it states in emergency it can be viewed , see below

It’s new to me but anything that helps us in an emergency

Always a learning curve 😀

Screenshot of medical is screen on iPhone

[Lacelady in reply to maxistar]

Thanks yes I agree it all helps.

[diana1998]

I've had a blue card since diagnosis. I sent to Amazon for a purple rubber steroid medical alert wrist band. It never comes off!

[Hosers2 in reply to diana1998]

Does the rubber wrist band irritate your skin at all? I think I would like that if it was not tight around my wrist, and I wouldn’t sweat under it.

[diana1998 in reply to Hosers2]

Not at all. It's loose and never comes off! Very comfortable.

[Mondelo]

Great post and probably sums up what most of us on here think.

[Suffererc]

Good to hear you are doing so well. Yes I was given a blue steroid user card from the beginning. I have also been sent a different one from the NHS, a Steroid Emergency Card (Adults). That was sent to me a few months ago.

[FRnina]

I agree. This forum has been indispensable. Although I have really good doctors and specialists, they cannot really fill one in on all the areas of experience this forum covers. From the small niggles to the bigger questions, there is always someone on the forum to help. A big, big thank you to everyone here.

[Harrywogan]

Abbey17, I got blue card with my prescription,had them in every bag then like you got S O S bracket which is far better never comes off I agree this forum is a god send just to know we are not a lone it's better the speaking to my G P.take care

[ChinaWuntoo]

Didn't know about new cards. I was never offered a blue one and in fact was told by GP that I didn't need one. Pharmacist gave me one immediately I asked. I wear one of those barrel necklaces where you can put information inside - this refers to the details on the blue card that I carry in my wallet. Put it on first thing in the morning and take off when I go to bed - every day whether I am going out or not. Seems the sensible thing to do.

And, yes, to all the good things said about this Forum. It has given me the information to share with my GP who seemed at first to be on a steep learning curve about PMR/GCA. As I've said before, my rheumatologist knows nothing - or gives a very good impression of that!

[Alebeau]

Thanks very much for this post

I am on year 3 and relate totally to all you said.

I was contemplating getting a bracelet but now I am convinced and will get one for sure.

5 is my goal as well but still only at 9 - slow reduction by .5 mg is essential along with regular blood work just to be sure you're on the right track.

This forum is great!

Thanks everyone for sharing.

[Noosat]

Thanks for post. I,also read the posts every day.

[MaritimeMags]

Dear Abbey17

I was diagnosed by GP three years. Have successfully tapered to 2.5mg. Up to six months ago I had no idea about how bad PMR can be in other sufferers. I found out about this blog site. Also,after three years, I respectfully asked GPs to refer me to someone who had a bit more knowledge about PMR as having blood tests regularly, DEXA scans etc associated with PMR was a bit hit and miss at my surgery, as Doctors changed all the time. I wish I had had a bit more information from my GPs about PMR when I first started on steroids, and what to expect in side affects. Five month wait to see Consultant but appointment coming up in May, when I will finally get to see a proper ‘Rheumy’.

[Hosers2]

I guess I should consider myself lucky. It took four weeks to see my Internal Medicine doc, and another four to see my Rheumatologist. But, once in, she diagnosed PMR almost immediately (9 different blood tests), and started me at 15mg Prednisone. She insists on a full set of blood tests every other month.

I hadn’t even thought about having a medical card or wrist band, and no one here (Utah, USA) has suggested it. Thanks everyone here. I am ordering mine today.

This site has been a godsend for me as well. Most of you are in Great Britain, which gives me another perspective on this disease and it’s treatment. The knowledge and, most important, the experiences of everyone here, has certainly helped me understand PMR and how to deal with it.

[PMRpro Ambassador in reply to Hosers2]

The treatment shouldn't really be that different - the guidelines are international, drawn up between EULAR in Europe and the ASR in the USA. A lot of US rheumies have some funny ideas though!

[Hosers2 in reply to PMRpro]

Like I have said before, there is a lot that GP’s aren’t aware of. Many haven’t even heard of PMR. And most have been indoctrinated into believing statins are the wonder drug for high cholesterol. Very few acknowledge the downsides of statins. They have just jumped on the bandwagon of the big Pharmaceutical’s.

[PMRpro Ambassador in reply to Hosers2]

I do wonder if the US system doesn't help for something like PMR. Here in Europe, especially the UK, a lot of the management is done by the GP so they do learn much more about it. Very often in the US they don't want to know, it isn't their responsibility, and there is a lot more autonomy for specialist rheumies as a result. Not saying that is bad - but it accounts for the lack of awareness on the part of GPs/PCPs.

[Tapestry1057]

Totally agree with everything you say Abbey. Left to just get on with things by GP and without this site I just don’t know how I would have coped....as you say it’s been a Godsend!! Diagnosed June 2019 and am now in middle of tapering from 4mg to 3 mg....my second attempt at this stage but this time am using the DSNS system. So far so good. Once again a big thank you for the advice and reassurance that I get everyday from everybody.

Tapestry 1057