My husband has been diagnosed with PMR, need as much info as possible!

A little over a year ago, my husband was in an accident at work, broke his wrist and injured his neck. After three days we both started to notice his body was stiffening up. We went to family GP and after short time he was diagnosed with PMR. He was put on 50 mgr of prednisone that day, and within 24 hours he seemed like his old self! He took that dose for a short while and over one year, he was weaned down to 5 mgr daily.he seemed to cope with that dosage, but now he has decreased to 5 mgr every other day and after one week I saw significant changes. No longer able to stand the burning pain of little things such as dressing himself. I researched as much as I could find on PMR and could not find any side effects that outweighed his present quality of life. So asked him to take 15 mgr (3 pills) to seek some relief, One day later was better, so the last 3 days he has done that.Now feeling a little more informed going back to Dr, but also going to consult with an osteopath! I am so confused after every thing I have read that DR. did not do more testing on his blood, no bone density testing and any other tests many of you may have gone through. I would appreciate any knowledge of tests that you all may have gone though, to come to a diagnosis of PMR! thanking you in advance, Lorraine

He absolutely CANNOT taper from 5mg per day to 5mg every other day. It MUST be done 1mg at a time. Never mind the PMR but his adrenal glands have been on a holiday while he has been on higher doses, now he must reduce SLOWLY to let them come back into action.

Your GP is wrong and has been all along - if his diagnosis was PMR the starting dose should have been not more than 25mg/day, 50mg is a dose for patients with suspected GCA. And someone with GCA belongs under the care of a rheumatologist. And to leave a patient on that sort of dose without blood tests and other monitoring is nothing sort of negligent. And if he causes problems - I'd remind him of that.

The long term effects of steroids below 10mg are NOT serious. Show this to his doctor:

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

it is a study done by one of the top US experts in the field who is really concerned about doctors not allowing patients to stay on pred at a high enough dose and for long enough. PMR lasts about 6 years on average and it takes most patients a lot more than a year to get to 5mg.

If this doctor won't help demand another opinion.

The mood swings could very well be due to the precipitate reduction in the dose of pred leading to the onset of adrenal insufficiency. He must also be terrified - I would be if I didn't know all I do.

EileenH, Thank you for this information but I still do not know how any one but Drs, know how to taper off this drug? I am starting to believe that my DR. is negligent, he is a GP and not even sure at how he arrived at this diagnosis let alone how he figured out that 50 mgs a day, for one month then half that thenext month! where do I go to find this information out?

" I still do not know how any one but Drs, know how to taper off this drug?"   Sorry - really not clear what you are saying/asking. 

We as patients, hundreds of us on 3 different forums and in the UK charities, have exchanged information from papers in the medical literature and personal experience with good and less good doctors to work out the best ways of tapering. The consensus is that going slowly is best - and there are many doctors who do so. But the basic information is available in the Guidelines for management of PMR:

https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

a link for which was in the original link to our resources post I gave you. It is issued by the American College of Rheumatologists and its European equivalent - so wherever anyone is they have nationally approved advice at their fingertips. If they bother to look.

In that resources link is also a link to this paper:

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

which is by a UK expert and his team.

Anyone who uses these 2 resources will see the correct starting dose and find suggestions for tapering. From 10mg the recommendation is 1mg per month - in both resources. The ACR/EULAR recommendations say "Recommendation 4: (PICO 6) The panel strongly recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events"  i.e. if the symptoms return - you have reduced too far or too fast.

Your doctor appears to have not even looked at these but used an approach for which there is absolutely no evidence - and which exposed your husband to unnecessarily high amounts of corticosteroid to start with - and then tapered in a way that is equally unique (I can't think of a polite way to say what I want!). Then, from 10mg the considerations are not just the PMR symptoms returning but also the return of adrenal function. This is universally agreed to require slow tapering after use of high doses of pred for more than a short period. He has ignored both concepts.

I don't expect him to have read this:

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

as it is relatively recent but it emphasises something that needs to brought to the attention of all doctors who think they know about managing PMR: it is NOT a short term illness but the average duration is nearer 6 years than the 2 so many claim and a dose of 5mg is required for many patients for years - not months.

As for how this doctor arrived at the diagnosis - I have no idea other than to say it is usually a clinical diagnosis, made on the basis of symptoms and a few tests to rule various things in or out. There is no definitive test to say "This patient has PMR". There are many causes of the symptoms we call PMR and they include cancers - for which other tests will act as signposts. The PMR we discuss on this forum is characteristic in responding well to a moderate dose of corticosteroid - 15-20mg/day is often enough, a few patients need 20-25mg. Once you start to use high dose steroids the waters are muddied because other things will respond to such high dose steroids as well.

I would suspect he has a belief, possibly gathered from personal previous experience, that if you use a very high dose of pred at the start it "stops" or "cures" the illness. It doesn't. Pred cures nothing, it manages the inflammation until the actual cause of the symptoms, an underlying autoimmune condition, burns out and goes into remission. Which for 75% of patients it does in something up to 6 years. Nothing will change the time YOUR PMR lasts - you will need pred as long as it does. 

Does this help?

@EileenH

thank you for such a wonderfully thorough response with so much information and links. I wish I could send your entire response to my rheumatologist but as it stands after my email response to him yesterday I'm not sure whether he's still going to be my rheumatologist after today. It's sad that we can't have a collaborative relationship on such an important illness and more importantly our life and well-being. thank you on behalf of all of the newbies :-)

Janet

You could sent it as a final riposte if he does sack you! However - if this is a RHEUMATOLOGIST then you are better rid of him...

He was unable to stand up straight, hold his head up, reach for the phone without excruciating pain. Could no longer get into a bath for fear of not being able to get  up and out! 

I'm on pred and well - I still won't get in the bath in case I can't get out. Thank goodness for showers!

I do understand this is a disease, and leaving would be a last resort! I have replied to JanetGarrett exactly what had happened to him and dosages of prednisone, but after a year of decreases his body no longer functions with even simple tasks. I tried to get him to go back to our GP over 2 weeks ago but until 2 days ago he refused!