Getting Below 10 Mgs

[Louisa1840]

I am, once again, trying to taper below 10 mgs prednisone. I have tried at least twice before and experienced a flare.

I was diagnosed with PMR in May 2017.

This time, I am tiptoeing using the DSNS method. Once I drop below 10 mgs I am going to drop by 1/2 a mg.

My main problem is the terrible stiffness in my hips. It feels like I have overdone it at the gym (which I haven't). In the night my legs ache SO much.......

I had stiffness years before I was diagnosed with PMR; I could hardly move after sitting for any length of time. Was this an early sign of PMR or arthritis?

How do I tell what is PMR and what is arthritis?

I do water aerobics 2 or 3 times a week, an hour of Tai Chi in a class & other random times when I can and do the exercises the exercise physiologist has given me to strengthen my hips. Am I overdoing it or simply not taking enough pred to control symptoms?

I walk like a penguin!

I would appreciate anyone's thoughts.

[Hidden]

I'd be inclined to seek a referral to a rheumatologist. It can be difficult to tell the difference between PMR and arthritis. This is from NICE:

Refer for specialist management if:

It is not possible to reduce corticosteroids at reasonable intervals without causing relapse.

Corticosteroids are required for more than 2 years.

This is probably extremely good advice as they also advise that doctors recommend PMRGCAuk!

[Louisa1840 in reply to Hidden]

Thanks Mike - I had been thinking along these lines myself. It's just that I hear such mixed opinions about the effectiveness of specialists. BUT I feel I am doing all I can; I follow such a healthy diet & lifestyle. It all seems so unfair doesn't it.......

Am I allowed a a "waah blub" moment?

[Louisa1840 in reply to Louisa1840]

P.S What is NICE?

[Hidden in reply to Louisa1840]

Hi yes you are allowed as many moments as you like! NICE is the National Institute for Health and Care excellence. They decide what drugs should be available on the NHS in the UK and for what indications. They also provide clinical guidelines such as these. They are not perfect, but if doctors followed their advice more closely there would be considerably less suffering from a variety of conditions.

[Louisa1840 in reply to Hidden]

Thanks again Mike. I am in Tasmania (Australia but we are proud ,slightly secessionist! ) Originally British born though.

[Rimmy in reply to Louisa1840]

Hi Louisa - you will see my response to Mike below - I am also in OZ - WA. As I said to him I was diagnosed at a similar time to you although I also have GCA. I am also still at 10.5mg - my lowest dose so far and unable to get below that for now with shoulder, neck and leg pain just bearable (mainly mornings and nights when Pred probably at lowest in my body). Not saying you shouldn't be checked for other causes but I am thinking we may have a wee distance to go yet with PMR ....

[Louisa1840 in reply to Rimmy]

Thank you Rimmy! Good to hear you're in Oz too - I had seen your name often but not realised.....

I think, to upack what you're saying, is I need to be a lot more patient which I know is the name of the game with PMR.

Do you see a rheumatologist? I have a very good GP whom I trust and am loathe to waste time and money seeing someone who won't be much help?

[Rimmy in reply to Louisa1840]

Hi Louisa

I agree with you regarding not 'needing' a rheumatologist if you are lucky enough to have a good GP which I also do. The main thing is your doctor listens and is receptive to information you bring them and prepared to get themselves up to speed with any developments and don't (In my opinion anyway) regard Pred as some 'demon' to be avoided when it is actually the 'best' thing still available for PMR - and preventing eyesight loss in those with GCA. Of course there are 'good' specialists too - if you can find one and have good access in OZ - I live rural/regional and this is not simple - altho some are happy with skype. So far however in conjunction with my GP 'we' have managed everything quite well I think - and it has all been bulk-billed. Yes it is all about time and patience and as PMRpro often says- 'slowly, slowly catchee monkey' - remember 5.9 years is the average duration.

[Rimmy in reply to Hidden]

Umm not sure about the practical application of that advice Mike - '2 years' is after all only about a third of the distance for most of us and the rate/timeframe many medicos suggest is often completely unrealistic as numerous posts I have read here attest. I was dx in Jan 2017 and am still on 10.5mg - and even a 0.5mg reduction has left me very borderline in terms of how much PMR pain I am prepared to put up with. Yes certainly we may have encroaching aches and pains from arthritis other causes but most of us can distinguish PMR pain after having experienced its nature and locations/expressions just prior to our first Pred treatment and certainly its renewal if we taper too fast. And as for the notion of 'reasonable intervals' - what precisely are 'they' ? - when even 'slow' 0.5mg reductions can result in a renewal of symptoms if we cross the boundary where our body is not getting enough to control the inflammation.

Clearly the issue of the average duration of this disease is frequently overlooked when our own or doctors' perceptions seem to (rather hopefully) imply that tapering is akin to or even a determinant of 'getting better' - I SO WISH !!!!

[Hidden in reply to Rimmy]

Yes you may be right, but on the other hand if you still need that high a dose after two years it may not be PMR and it is worth getting checked out. I have found at least one good paper suggesting that that the diagnosis should be reconsidered if there is too much difficulty in getting below 10mg. They suggest that possibly 50% of people may have an alternative diagnosis ohter studies show that PMR may eventually prove to be the wrong diagnosis in around 15% of people. There is also a suggestion that chloroquine and hydroxychloroquine may be good alternatives to steroids where people have difficulty in reducing the dose of pred. In addition, if the diagnosis is found to be for example RA, then different treatments may be indicated.

The problem with PMR is that it is a presumptive diagnosis with no one distinguishing clinical feature or blood test. Everything I have read says that you need to keep an open mind about the diagnosis as the disease evolves.

[Rimmy in reply to Hidden]

Thanks another for another point of view Mike - I do find it both interesting & disturbing however that '50% of diagnoses' may be incorrect - I would like to read the evidence for that conclusion so it would be helpful perhaps if you post a link to this paper or give the citation.

[Hidden in reply to Rimmy]

Hi Rimmy

I was editing my response as you replied - sorry! I'm looking for the paper now, but I have found some other references which you may find interesting.

academic.oup.com/rheumatolo...

ard.bmj.com/content/60/11/1021

emjreviews.com/rheumatology...

I'm afraid I still can't find the reference to 50% although the paper kept on popping on in previous searches. If I see it again I promise to post it.

[Hidden in reply to Rimmy]

Hi Rimmy. I've found the paper: ncbi.nlm.nih.gov/pmc/articl... It's only one study, but definitely pause for thought.

[Rimmy in reply to Hidden]

Thanks for these links Mike which are interesting and mainly about initial differential diagnoses of PMR and Rheumatoid arthritis - but not what I think Louisa was asking - ie. about 'arthritis' generally and how we distinguish the 'normal' aches and pains of ageing - which can start to become more apparent as we taper over a long period of time - from those of returning or 'flaring' PMR. But yes these articles are clearly important for those who think they may have RA and not PMR.

Best wishes

[Hidden in reply to Rimmy]

Agreed.. but i think we all have that problem about normal and not normal. There are many references to augmenting steroids with nsaids during the rundown, but that brings a new list of problems.

I think the key thing is to always be willing to look with new eyes at what can seem an insoluble situation. That also means being willing to consider new possibilities even when things have been ticking over for years.

[nuigini]

Hi Louisa, I meant to reply days ago, but got delayed. Better late than never?

All I can say is I can relate more than I can say to your hip, leg and walking issues. Even down to doing water aerobics in an attempt to solve the problems.

Up until a year ago I lived in a remote area of northern Canada with limited access to medical specialists and only locum doctors and nurse practitioners. All the ones that I saw blamed PMR for my leg issues, most likely because the issues are totally bilateral. I never believed it for many reasons, not the least of which I’ve continued with the problems all through my 5+ years of PMR, prednisone has had no effect, and the problems have been getting worse over the last two years.

I recently moved to Alberta and was fortunate to find a wonderful GP who referred me to a variety of specialists, who in turn ordered a variety of tests to assess the leg issues. Those tests have revealed the issues with my legs stem from problems with my spine. I have compression in the lumbar region, degenerative disc disease and herniated discs in that area that in all likelihood are the cause of the bilateral leg issues. Like many I've had lower back problems for decades, which I gather have progressed over the years. A boating accident a couple of years ago exasperated things. I'm now doing all I can through exercise to strengthen my core muscles and muscles supporting the lumbar region to hopefully prevent further deterioration and alleviate some of the current problems.

Hope this helps.

[Louisa1840 in reply to nuigini]

Thank you so much for your "better late than never" reply!

Coincidentally, I have an appointment to see a rheumatologist here in Hobart this afternoon. I have previously managed with my GP who is very good. But I feel I am worse not better after nearly 3 years of PMR.

There is a post just put up about weather & flares which I find very relevant for me. We have had lots of low pressure systems over Tasmania recently & I have hardly been able to walk.

Diagnosis is everything isnt it and now your spinal problems have been revealed hopefully you may get some relief? My hip & leg issues are not bilateral so I don't think it is the case for me.

Will let everyone know how the appointment goes! Fingers crossed.

Hope all goes well for you.

[nuigini in reply to Louisa1840]

Best of luck to you! Air pressure is definitely a factor for me as well. And, I'm also now beginning to suspect altitude...stay tuned...off to do more research!😆