Doctors dismiss my PMR

[amilou2006]

i was diagnosed about 6 years ago with PMR from clinical doctor he put me on steroids i was on high dose of prednisolone for 2 yrs . I was told i would be cured, but they didnt make any differance i still have flare ups and painful days and my new gp practice doctor says its not PMR hes not the only one too they all seem to think once you have taken steroids your cured. Im so fed up now as they are making me feel like its all in my head .

[SnazzyD]

Hello. What kind of doses have you been on, especially that first two years? Would you say they helped at all at any point?

[PMRpro Ambassador]

It would be very helpful to know a lot more about your 6 years on pred - what dose were you started on and how long did you stay at it? And what has happened in the last 4 years?

The usual starting dose is 15-20mg - and if you don't respond well to that or 25mg max then the question immediately has to be "Is this really PMR?" After a couple of months at most, a slow and careful taper is started to identify the lowest dose that manages the symptoms as well as that starting dose did - you don't stay at the high dose for a long time. If you then experience difficulty in getting to a lower dose, the question comes up again, "Is this really PMR?" The majority of patients will get to 10mg or less within a couple of years and mostly much sooner - half of patients get to 5mg for 6 months in just under 18 months.

There is a growing group of us on the forum who have what we are calling Long PMR - and many rheumies acknowledge it exists but say most patients get to a relatively low dose but not to zero. Some of us need a lot more but there is no sign of another identifiable autoimmune disorder to cause the symptoms, they remain typically PMR.

But the bottom line is that pred is never a cure - it is a management tool to allow a better quality of life in the meantime until the autoimmune disorder burns out and goes into remission. For 1 in 5 that is in about a year, half are off pred altogether in just under 6 years and 40% are still on a low dose of pred at 10 years.

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are two articles about the same study that identified those times but with a bit different emphasis.

Perhaps your new doctor would like to read them - but he is right to question you being just left on pred indefinitely. Any patient in that situation needs to be referred to a rheumy - they don't always get it right either but they have access to a lot more diagnostic options to be more sure and a lot of diagnoses of PMR made by GPs probably are incorrect.

[SheffieldJane]

How depressing for you to be faced with such ignorant, laziness from your doctors . You probably know already that they have been wrong on so many counts. For instance Pred does not claim to cure, it deals with the pain and inflammation whilst the disease runs its course. The aim is to get to the lowest possible dose that controls the symptoms by means of a careful taper. You should not be left on a high dose. If Pred is not working there are supplementary steroid sparing drugs that can be tried. PMR lasts on average, about 6 years. You would be extremely lucky to be free of it in 2 years.

If your current GP is so sure that it is not PMR then they should be running tests to discover what is causing your pain . Tests such as an MRI scan, X-rays, blood tests and so on. Do you have a friend or family member that can go with you to the doctor, to insist that they get to the bottom of this? Sometimes when we feel that we are not believed, we are unable to be our own best advocate. If it is feasible, it might be worth seeing a Rheumatologist privately. Where abouts in the country are you? Someone maybe able to recommend one of our “good guys” for you to consult.

[Maisie1958]

Hello Amilou2006. I definitely sympathise-been on low levels of prednisolone that have worked really well in keeping my PMR in check for almost 6years. Made the mistake of getting in touch with my GP in February as had a few episodes of bilateral symmetrical actual joint pain , cleared by raising my Pred to 4mg daily. He has said it’s “wear &tear” and refused a repeat of prednisolone (I still have a stash) Says PMR only lasts 1-2 years but handed out 100 Zapain tablets- he’s not seen me for 3 years and this was phone consultation. I’ve had another phone consult with a better GP but have just booked with a private rheumatologist for the end of the month -I’m so frustrated and cross. How can they prescribe all those paracetamol/ codeine tablets that are no help but say prednisolone has too many side effects! It’s even more difficult with no face to face consultations and trying to get a call back is like asking for gold! I hope you get sorted- sadly it’s too easy to get dismissed. Unfortunately the only way I can see is for an appointment with a private rheumatologist, the waiting lists for an NHS appointment are too long at the moment. Seems unfair. Please keep on at them- they should be arranging at least blood tests and scans for you x

[amilou2006]

I should have explained further that i am off the prednisone after the 2nd year and have been left with pain killers that just dont do anything and the doctors have changed my medication afew times but nothing seems to touch it when it flares up .I'm so far taking pregabalin and codine with naproxin .I have recently had another xray which has come back normal again . It just seems like no one believes me and because i have bouts of anxiety and depressen i feel that makes people more inclined not to believe me .

[PMRpro Ambassador in reply to amilou2006]

All I wrote above still applies - but you need to find a doctor who understands that PMR doesn't last only 2 years and that pred is the only medication that deals with the inflammation and, therefore, the symptoms. You need either a GP without any preconceptions about your anxiety or a private consultation with a good rheumy who will listen. You probably still have PMR that isn't being recognised and treated. But until you can find the right doctor even we can't help.

[Hidden]

As said here before there is a unknown root cause that makes it so long lasting and expecting that Pred will cure you is scientifically proven to be incorrect. Shame on those doctors as they should now. But what is next for you=> finding the root cause as your body is apparently not able to eliminate the unbalance in your body itself. Researchers point towards probably causes as environment, diet (to much or to less of certain nutrients), smoking, alcohol, lack of exercise, ......, as they can’t find yet a single cause. Expecting that a reumie is an expert on all those fields at the same time is not likely to be your salvation. Visiting numerous other specialists that on top are often not used to communicate with each other, might be a very long frustrating road. My advice should be keep dangers levels of inflammation under control (reumie can be useful for this), eliminate all possible causes in your surrounding anyhow as diet and lifestyle and find if that is not enough a good holistic practitioner that looks with a broad approach at your situation and won’t let you go before the root cause is found and eliminated. By making yourself more healthy you might slow down or even reverse your biological clock and avoid further age decline for many more years and avoid other diseases that otherwise would have popped up on top of your PMR.

[Johnnox]

Dear amilou2006.Apologies for the late reply! I was barely functioning when diagnosed with PMR. Pain was ever-present and I found getting into cars, out of bed, moving in my bed extremely difficult. Within a couple of days of Pred 25mg, I was back to my old self and the effect was exhilarating (figuratively). Totally pain-free and able to move about. After 4 years I'm down to 3mg and while discriminating for PMR with issues like Parkinson's and it's medications I reckon I'ld be in big trouble without Pred. Reviewing in 3 months and the slow march to possibly 0mg. Problems with my skin but otherwise no discernible issues.