I've just read Martin Scurr in the Health Section of Tuesday's Daily Mail. It's the second article after the Tinitus question.
Surely the answer should be NO, he is right it isn't a cure either but he should be saying nothing other than steroids works just to be clear.
It does seem to subtly imply that there are other choices in saying Pred is the “main” drug. Perhaps they were meaning the steroid sparers too but it isn’t totally clear is it. At least they were saying it isn’t all over in a couple of years for everyone.
He did seem to have a better idea than some GPs I must admit.
He has learned something somewhere - some of his PMR offerings in the past were dire ...
Says "main drug" which is correct, but some on here cannot take Pred, so are on others. Not sure how successful the alternative are, but you may get replies.
As SnazzyD says at least there is acknowledgement of PMR timescale being 'longer than 2 years' - and does mention 6 years, and even 10 years!
I’ve haven’t come across any other effective treatment other than pred so it’s new to me that people can cope on other meds as they can’t take pred. But I’m not as knowledgeable as you or PMRpro research wise and your experience on here. I’ve learned something new. I wish they would do an article on PMRGCA too rather than a brief overview. Might have done something before but something more recent would be good.
Those who cannot take Pred do seem to 'manage' on others, but nor sure how well their PMR is controlled or if it's a slightly different version ... and I certainly wouldn't want to rely on any other with GCA - but that's a whole different story.
I think he just worded his first sentence badly , which didn't help but it was nice that he learned from previous lack of awareness and mentioned the fact that many people can relapse or have PMR for six years or more.He should have said if a dose of steroids over a few days helps the pain this is a good indicator that you have PMR but that isn't a cure and the steroids are required to manage the illness until the PMR has gone.
I began to wonder whether it's the word limit that didn't help.
He could mean that steroids are the "main" treatment , in the sense that this is the main treatment but it is sometimes used alongside other things like steroid sparers or biologics.
He probably didn't want to give the person the idea that they could start asking for other treatments by mentioning what he was talking about and to persuade them to try the steroids.
It certainly wasn't great having to quickly Yo-yo steroid doses with GCA and reduce as much as possible between flares because of the risks it caused for me to be on steroids even at lower doses.
I will be really interested in why people can’t take pred , what they do take and how they cope. Hope this post generates some good responses.
It does cause some rather INTERESTING psychotic effects in a small number of patients.
So glad I am not one!
That's if you call suffering hallucinations , feeling suicidal , unprovoked terrors and self harm , interesting.
Can’t even image how people cope with those side effects and the condition. It must be very disabling and distressing.
Well that's why they have to try other alternatives which don't work very well, and are stuck with more pain and symptoms during their time with PMR. I just feel lucky I could manage my physical risk factors on steroids but I had to go up and down on doses like a rollercoaster and never really got a good quality of life whilst I was being treated for GCA.
I’m in to Y7 PMR and now on the Sterling Trial using Methotrexate as a steroid sparer only normally used for GCA.
Hope it works well for you. Take care , Bee
This is a recent post -
I know someone who swore by Methotrexate. When I told him I was on Pred he advised me to ask my GP for Methotrexate instead. !!
As far as I know he never had Pred, but was always given Methotrexate, so he may not have had PMR, but perhaps something else? He's now retired to Cyprus, so I don't know whether he's still suffering or not, but in a much warmer climate he probably won't suffer the aches and pains that I do every day.
It's a great shame he doesn't mention asking your GP for a referral to a rheumatologist to look at DMARDS and alternative diagnoses if PMR goes on for many years. At least it mentions things like the journey not being straightforward, that relapses are common and the average is way over 2 years, so that is some progress. But now Google knows I've read a Daily Mail article, a paper I hate and abhor, but one the charity probably should work more with as its readers are PMR/GCA age. Michael Mosley has done well to get his messages about diet in particular out there using it
Dreadful rag - but I bet there is an increase in requests for appointments related to tinnitus and PMR next week!! GPs I knew in Scotland always read the Sunday Post to see what they needed to read up on for the following week! Not that the SP is anything like in the rag league the DM heads ...
Ha ha I'm going to ask my GP friend if she sees the Daily Mail effect in the surgery 
though there is no way she wll ever read it, she's a Grauniad reader through and through
No many people admit to reading do they????? Is it one up from The Sun???
I’ve never read it, but I did appear in it 10 years ago regarding my GCA….and they did get their facts correct. Maybe that was their 1 in a million chance…😳🤣😂
Although I did get stick from my son - he’d had a run in with their financial correspondent some time previously….
15 mins of fame for you too for those who read it.
No
can't bring myself to read it... my parents knew the family... I'll say no more.
Me neither - when a link appears for it I have to take a deep breath before I can click on it! Just think - someone looking for stuff on my computer when I'm dead will see it in my search history!!! My MIL read it religiously every day - and believed it all. I was ashamed it was in my paper recycling when she lived with us ...
You go further than me then. I can't even click. I remember the Scurr family well!
Don't rate his opinions - but other people may do ...
Didn't really rate the family... but they were definitely respected in my area.
Were they doctors too?
Oh yes!
The power the title "Dr" holds ...
So true.... I saw more than one should and realised at a very young age.
Cyril Scurr was a consultant anaesthetist. Martin his son now retired but think he might work as a Private GP
or a journalist one ...
I read it mainly for the puzzles 🤣😳 but the health articles always get me going.
I only ever believe in one part of any newspaper...the crosswords!..love them
That’s me!! The other bits cause heated pointless discussion. I get the online version so I can ignore all the rubbish at the flick of a finger. It barely registers that way.
OH loves his walk for the paper every morning.......he takes the middle two pages out for me....all puzzles, if this old body is useless I'm trying to keep the brain going!
That why I get local paper for the walk and the crosswords etc - no point for news… it’s typically Dorset,.. about 3 weeks behind the curve [and that’s on a good day😳]
Keeps you moving, that's good......👍
Fortunately since replacement knee/hip don't have too much problem - apart from a grumbling back if I do too much [combination of long term mild spondylitis & sacroiliac joint]. As the saying goes - use it or lose it...
Methinks I've lost it!.....I'm looking out of the window at a love ly sunny day........in my head I'm on a ramble by the broa ds......but the extreme weight of my legs and balance problems/blurred vision....stuck in this chair! Have been round the garden where I feel safe....Fingers crossed I get some answers after brain scan....
Sorry to ramble on!.....
No problem.. we do 'ramble' as well as the next man or woman!😊
I’m also immobile with OA and pred muscle wasting I’m sat looking out at a nice sunny day and mourning for the garden. Do have a mobility scooter and a chauffeur so can’t complain. I hope the caudal sacroiliac inject helps next month
Yes hopefully 🙏 I know that feeling well, also have Osteo in base of spine. We all struggle on, roll on spring!
One way of getting moving ...
Pretend you're me - snowing heaven's hardest out there still!!! You wouldn't want to be out.
No, bet there are plenty on skis though. It has been depressing here, days and days of rain, flooding all round Norfolk. Poor children on half term. I can guess what they are doing, on screens!
Hallelujah - finally admissions that PMR lasts a long time in some patients!!!
If you read the literature the usual statement for years has been that "corticosteroids are the mainstay of management of PMR and GCA" and mainstay is defined as "a thing on which something else is based or depends." It is subtle but some people don't know the difference between saying that and "main" and it saves space on a line count ...
But that is true: pred always works if it is PMR as we mean it but using so-called steroid-sparers may reduce the risk of flares, reduce the amount of pred a patient requires and even in some cases replace pred altogether, There are people on this forum on hydroxychloroquine or leflunomide who, for a time at least, have dispensed with pred altogether. And in the meantime we have tocilizumab, sarilumab and Kevzara, all of which will replace pred in PMR in up to half of patients. Just because you can't have them in the UK doesn't mean it isn't true!
That is probably why I haven’t heard of those drugs instead of pred as we can’t have them here probably because of the cost versus 3p a tab for pred
Do they work as well though?
For half of patients the IL-6 inhibitors (the -mabs and Kevzara) probably work just as well for PMR as they do for GCA. But about half of patients with GCA have at least two other underlying causes of the inflammation involved and these monoclonal antibody drugs are very specific, only deal with one thing. So another drug is needed for these other causes. Pred is multipurpose, kills all known germs so to speak. The other drugs I mentioned only work for a small number of patients, you have to try them to find out if you are one and most usually can only be initiated by a consultant. So many PMR patients never see a rheumy so plug on with pred.
I was chatting to Dr Ann Morgan the researcher after a talk she did on vasculitis and challenging current GCA dogma that it is just cranial. Anyway, by the by, I mentioned I was on Hydroxychloraquine for PMR and it seemed to be working for me, but of course there was no way of knowing. She said a professor colleague of hers who has sadly now retired thought there may well be some mileage in these 'older drugs' for PMR. Sadly I didn't make a note of his name but will ask her and have a bit of a google about him sometime. Dr Mackie has always said that some DMARDS may well work for some people, it's all trial, or (my words not hers) more like a stab in the dark with so little research ever done before.
I don't think there is any real dogma that GCA is only cranial - unless it is in the USA and UK. Certainly that isn't my experience here. And there is the "spectrum" paper from Christian and co, I really wanted to ask her questions but couldn't get it to work. I wasn't sure about a few things she said.
I'm not quite sure what she means by 'current dogma' then, but she has very kindly agreed to do a talk for the Yorkshire support group sometime so I'll know more then. The gist of the talk I went to was that it is a spectrum and that LVV is often undiagnosed and also often GCA if it isn't the 'classic' symptoms
I like her a lot - I met her when I visited Sarah some years ago. We had a very lively discussion ...
LVV is invisible - and I think most of us with dodgy PMR actually had that at some point. There was no sign of it when I had a PET-CT before we graduated to TCZ. Now it is decrepitude and learned problems with the immune system and pain registration.
Dr M has checked me for LVV a few times, aorta. PET CT scans etc. At one point I was almost hoping they'd find it so at least I'd know why I felt so dreadful and I could try TCZ. I think I have what is known as PMR ++. I wish there was a way of switching everything off and then on again to reset - it works with computers and phones LOL. Actually I'm sure I have seen somethng on telly where they did it with somebody's irregular heart, one of the Van Tuleken brothers
That's what they do if you have a fast arrythmia - either stop your heart beating with medication followed by an antidote or using the jump leads. Either way they hope it will reset the electrical system in the heart and it will go back to a normal rhythm.
Yikes, hope I never need that. Does it usually work?
I believe so! Don't think they have had to try it on me yet!
I would love to do a long fast to see if that does a cellular level reset/autophagy. I keep trying but can't get past the 24 hour mark without food and or even get into ketosis to do keto diet, presume because still on 10mg Pred. I've done it in the past but many years ago. Or maybe it's just psychological and I need to push on as my BS was OK when I wore the CGM, I didn't have random BS spikes then.
You have to get used to fasting slowly and carefully - preferably under supervision.
My strategy is to really cut carbs, then to try keto for a few weeks (which I have done successfuly before) and from there eventually do a fast for 3-7 days. The last time I did it I just did it! Fat chance of getting any medical supervision, but I have run it by GPs in the past who couldn't see any reason I shouldn't try it. Once I got through 48 hours I felt rejuvenated, euphoric even but gave up after the 3rd day because I was bored and was lured out to the cinema where I promplty ate a bag of maltesers 😀😋
Here it doesn't have to be medical - there are often fasting groups, especially during Lent, which are led by experienced therapists, sometimes as retreats.
@Estellemac 😆Please can you amend your post title to include something like - 'Article in the Daily Mail answering a question on PMR' so people can find it easier in the future. I was nearly put off reading when I got to the words Daily Mail 😆😆
Seems to be a common thread the DM being a bone of contention but it does get your juices flowing to see what they have said now. It always amazes me how they save the world each week with their campaigns etc on a massive variety of topics too.
I agree they are good at campaigns, and even the money advice - I learned how to do Powers of Attorney via an article. I'm pretty sure Dorothy Byrne has published articles about GCA in there. My dad says he only buys it for the crosswords too, but he also picks up some of the political bias and crap from it. He was spouting the other day about how the country is being destroyed by 'Woke' and I had to explain to him that he was actually woke himself, that it's a good thing and he should be proud of himself as I am for not being racist or sexist or any other kind of @rsehole.
Me and your Dad are on the same page 🤣
Well maybe you can help him with the crossword clues then 😜. He reckons he's hopeless at technology and has us kids running round doing all sorts of stuff like emails and whatsApp for him, but doesn't seem to have a problem Googling or even using Alexa to look things up for crosswords! At 89, it's good to keep his brain working I guess. And he does cut out and save me clippings on low-carb eating
Around a third of patients need steroids for 6 years or more but half of all patients can stop after one or two years ?
I was hopeless at maths at school so could someone explain please how the above is correct.
DM’s creative accounting? Told you my son fell out with their financial correspondent😳…seems to be catching.
I don't get it either? Why not use percentages but then I don't do maths either way.
Half plus a third is still less than one.
You start with 100 patients, At 2 years you look to see how many patients are still on pred - and find there are 50, the other 50 have stopped already. At 6 years you look to see how many patients are still on pred - and find another 33 have been able to stop taking pred, there are 17 patients still needing some dose of pred.
Of the orignal 100, 50 (or half) needed pred for 2 years, 33 (or one third) needed pred for 6 years.
Makes you wonder why so many doctors are convinced that you should be over PMR or GCA and off steroids entirely in two years or less if those are the actual figures.I wouldn't be pushing someone to be off medication or questioning their diagnosis if the chance of being treated entirely in 2 tears was only 50/50.
Quite. Our point exactly. I wish I understood where this concept of 2 years came from. As far as I can see, it was mentioned as a timescale in an early and hardly conprehensive paper but without any real data to back it up. But somehow it has stuck IN THE ENGLISH SPEAKING COUNTRIES. Here it is accepted that many patients may be on a low dose of pred for years, sometimes indefinitely.
E- mail question. 
Covid 19 chat Thursday 19th March
PMRGCA Charity Week 19th-25th June
50 mg pred, daily life span
