I’m posting this link (written by a PMR patient in the USA) mainly in response to JMT_hiker’s recent post. It is a story of mismanagement of PMR and medication due to lack of understanding of the disease and how Prednisolone works and consequences for the patient.
Fortunately, the majority don’t and will never experience such mismanagement and consequent problems due to ‘fear’ of steroids on the part of doctors/rheumatologists which is, in turn, instilled in the patient.
Really good
Really useful for people to see - thanks, been up before but, as so many things, so worth repeating for newbies.
I thought it had but couldn't find in a search. Must try harder 😁.
Not the most user friendly search facility on here….
Found it on Mr.G. 😉
Very well written. I particularly liked "Devil’s Tic Tacs" expression. Thank you for sharing.
Really interesting to read. I'd personally not come across it before. Thoughtfully written.
Very interesting post. I don’t remember seeing it before. Chimes with my opinions.
Link doesn't work for me. I'll see if I can find it.
Try this, Bcol:
It's a good article that elucidates our problems quite succinctly (said he, wondering where on earth these clever words came from!).
I've had PMR for over 13 years, and I've been on Pred for over 12 years, and during that time I've also had GCA twice. However, my doctors (GP and rheumy) were reasonably well aware of PMR and Pred, so they've more or less let me dictate the rate at which I've tapered. Even with my own ability to do some research into PMR, it wasn't until a few short months ago that I found this forum, and since then my knowledge has increased by an order of magnitude.
However, for those who are not as literate as the majority on here seem to be, PMR/GCA must be a terrible thing. By that I mean in the article he mentions that many patients are better informed than the professionals. That may be the case for those of us who are well educated and who were taught to investigate things for themselves, but for those in the bottom school classes, for whom life is something to be lived rather than understood, PMR/GCA must be an absolute terror.
They know no better than their doctors, they don't have the mental tools to go looking for answers themselves, and whatever mismanagement they suffer, they don't have enough skill with language to express themselves clearly to either their doctors or to people on forums like this one in order to gain better understanding and better help with the pain and suffering they endure.
For them life just continues to be a permanent uphill struggle from day to day, with no end in sight, while their ignorant doctors continue to pontificate wrongly about the life threatening side effects of drugs like pred, while completely ignoring both the crippling disability of PMR, and/or the blindness inducing symptoms of GCA.
I wish there were some mechanism by which ALL PMR and GCA sufferers could be put in touch with this forum and the others like it, which can help and explain so much more than an overstressed and pushed for time GP can. Perhaps a leaflet with a list of links to this site and others like it, should be a mandatory requirement for all GP surgeries, along with instructions for the reception staff to hand one to every person who is diagnosed with PMR or GCA? The cost would not be great, but the benefits to both the patients and the doctors would more than outweigh the initial cost of setting up such a facility.
Just a thought.
"PMR/GCA must be an absolute terror."
Not always sure it is. In the case of PMR, the stoical older generation just get on with it. many probably don't even go to the GP, they just assume it is advancing age. This charity was greatly driven by younger patients who weren't prepared to accept this was it - and one lady in particular who was appalled to discover that nothing had changed since her mother had had GCA 20-odd years earlier.
I wish there were some mechanism by which ALL PMR and GCA sufferers could be put in touch with this forum and the others like it,
Think it's called the internet.... before the dreaded Covid - when paper copies of any leaflets were 'banned' from NHS waiting rooms there used to be leaflets in waiting rooms - usually left by existing patients...
The cost would not be great, but the benefits to both the patients and the doctors would more than outweigh the initial cost of setting up such a facility.
The charity does all it can to promote the illnesses, but it doesn't have the funding that a cancer or cardiac charity may have... so it cannot fund such an proposition... much as I'm sure it would be delighted to.....
I think you probably underestimate the cost! And anything is too expensive when there is no money available.
I agree with your comments about patients who are poorly informed and how they may well be on a very difficult, rocky path compared with others.
There are indeed ways in which this forum is advertised, eg, notices in Rheumatology waiting rooms - which is how I found this forum - and GP surgeries: there is one on the notice board in my surgery’s waiting room that I took in but I’ve no idea how knowledgable they are in PMR/GCA: I haven’t seen mine since one former GP in the practice suspected PMR after a long, painful four months during which she persisted and ordered a raft of blood tests to reach a conclusion and refer me to a rheumatologist. Another way awareness is raised is by purchasing Christmas cards from our charity which contain some information on the back. As you say, advertising is expensive and our charity is self-funded and solely run by our wonderful volunteers. There is an NHS leaflet that explains PMR and GCA that GPs and rheumatologists could perhaps hand to people on diagnosis.
While I’m here and talking about this free to all forum, a yearly membership (not compulsory) works out to just £1.25 a month and entitles members to a quarterly magazine that is extremely good value for all it contains. There is no pressure to join but money raised helps to keep the charity going.
I’m pleased to know that the forum has been useful for you and that it has increased your knowledge of your diseases.
I just wish I'd been aware of it 12 years ago when I first started on Pred, or even perhaps 13 years ago when I first became ill with what was later diagnosed as PMR. It would have guided me much more quickly to getting the diagnosis and on to the Pred conveyor belt.
Lot of us can say that - and it may/would have saved my sight - but it is what it is...and we can only keep helping new patients...
Without really wanting to go back over old ground I have, for interest, looked at your post of 4 months ago and I would say that reducing your 10mg pred dose “by taking 10mg once every three days, then once every two days, then every other day, then twice every three days” etc started you on a slippery slope. Even though you eventually remained on 10mg daily for a couple of months the damage had been done and your system was not at all stabilised and instead didn’t know what had hit it. Then, I would say the reduction to 9mg tipped your immune system over the edge. With your difficulties in tapering your pred dose and your diagnosis of GCA (without urgent investigations, it seems!) your GP should have referred you to rheumatologist.
That’s all in the past but I thought it worth bringing up again in case any newcomers to the forum read it and heed the warning that difficulties in reducing pred such as those you experienced may lead to prolonging of the disease and further complications.
PMR without Prednisolone
PMR, Prednisolone and Poland 
PMR/Prednisolone/Alendronic Acid
PMR and Prednisolone
