Long term PMR

[hjbradshaw]

I was diagnosed about 15 years ago and responded really well to the high dose of steroids at the time (ESR 130 and CRP 85). However rheumatologist says I am one of the small percentage of people who has it for the long term. I am on 7mg at the moment but seem to be in an enormous flare&scan hardly turn neck

[PMRpro Ambassador]

Me too it would seem - I've had the dx for nearly 8 years and been on pred but the symptoms started to be noticeable about 13 years ago. To my knowledge it hasn't ever gone away but I have had a few flares in that time, the first real one was the one 8 years ago that resulted in me working out what it was.

When I have a flare though it is less "PMR pure" that really causes the problems but myofascial pain syndrome - if that is dealt with it makes a big difference to how am am able to function. That said - in January last year I had a very strange flare which started with extreme breathlessness which appeared from one day to the next and only 2 or 3 weeks later did the more typical PMR symptoms in the hips develop. It required an increase to 15mg to manage the breathing problems. It was at least a few months before I could get below 12mg without the breathing problems reappearing. Since then I managed to get to 10mg where the reappearance of MPS pain in lower back stopped any further descent until my GP did some needling and then I got to 8mg. Stuck again - I have finally got the physio/manual mobilisation therapy the GP suggested and am managing fine on 6mg now.

Neck problems are a common feature of my MPS - maybe you could use some manual therapy there if you don't want to raise the pred? And in the past I found that either my osteopath or my Bowen therapist could work miracles on the spasmed neck and shoulder muscles that caused it.

[hjbradshaw in reply to PMRpro]

Have raised the press for a couple of days to 15 because I could hardly move in the mornings, but will go back down to 10mg tomorrow and try to cope with that for a few days. I have a very good physio who will sort out my neck when I see her on Tuesday but I am also wondering if there might be an underlying infection going on somewhere as I feel so poorly... only time will tell! But it is 'nice' although sad to meet others who are in a similar situation and for whom it is a long term problem. I was actually diagnosed when I was 51...

[PMRpro Ambassador in reply to hjbradshaw]

Started to be noticeable at 51, dx'd at 56 (just, not quite 57)

[hjbradshaw in reply to PMRpro]

I should have said I was diagnosed at 41, not 51, and responded really well to the steroids...

[PMRandRA in reply to hjbradshaw]

15 to 10 is a huge drop in 1 go. Far better results can be had by reducing by 1 or even 2 1/2 per drop which could be once a week or as soon as you feel that you are dealing with the drop adequately. If it takes a month then so be it. We can't rush pred! .

[polkadotcom]

Welcome to my club, hjbradshaw. Now 16 years on steroids, I am in it for the long haul having been diagnosed with secondary adrenal insufficiency. Currently on 6mg.

I have also been in a flare recently, but I'm sure that mine was caused by stress.

[hjbradshaw in reply to polkadotcom]

Thanks for the welcome to the 'club!' It is good to meet others in the same situation as I have not met anyone else 'in the flesh' who has had to deal With it on such a long term basis! Will keep you posted as to how things go over the next few days-am at work at the moment but very hot and sweaty partly due to running a temperature and partly because of the raised dose of pred... Sorry to hear about your adrenal insufficiency: it is always something I am aware could happen to me as well as a friend of mine has it after being on long term steroids for another condition! How does your adrenal insufficiency manifest itself for you?

[PMRandRA]

Have they ruled out Rheumatoid Arthritis? Bloods should show whether it is RA or PMR. The neck and shoulder pain could well be RA and the right treatment will alleviate if not cure symptoms.

[hjbradshaw in reply to PMRandRA]

RA is query in my notes but because Polymyalgia is an inflammatory disease and I have no other RA symptoms it has been left in the notes. But I am on similar treatment anyway as well as the steroids: leflunamide and sulfasalazine. I really notice it after a few days of not taking those of I have an infection or flare-the symptoms get much worse in certain parts of my body, particularly feet because I have arthritis in my feet and ankles anyway and in my spine (spondylosis/spondylitis). They wanted to put me on something else which is very expensive and whose name I can't remember, and so we gradually lowered my pred to 5mg but I didn't flare sufficiently badly to warrant the expense! However shortly after that I did flare, but it was too late and the local NHS Trust had said no!! 😓

[PMRpro Ambassador in reply to hjbradshaw]

Unfortunately there are no definitive blood tests for early RA either - and you can have a sero-negative version too.

Did they mean tocilizumab?

[Tonylynn in reply to PMRpro]

Anti ccp? Raised anti CCP is strongly associated with RA and that includes early.

[PMRpro Ambassador in reply to Tonylynn]

It isn't perfect either so isn't definitive:

ard.bmj.com/content/63/9/1085

says "This study confirms that the diagnostic sensitivity of anti-CCP antibodies in patients with recent onset RA is the same as that of agglutinating RF (64% for both) "

The specificity is high at 96%. But it doesn't necessarily help in differentiating between PMR and RA because while if it is positive that is highly suggestive of RA, being negative is, like the TAB, not conclusive.

[Tonylynn in reply to PMRpro]

Still worth having the test then !!!

[trish29]

Hello hjbradshaw..it is a comfort in a way to know that there are other PMR sufferers out there that have had it long term and i feel for those people. I have had PMR 13 years and i'm still well and truly struggling ..Over the years i felt that i always had something else along side the Refractory PMR such as myofascial pain Syndrome and went for Bowen Therapy at regular intervals which i felt helped me . My Rheumatologist Dr Hughes confirmed i still have the Refractory PMR . Recently i had dreadful flares to my legs particularly the right leg .It always happens when i go below the 15/14.05mg steroid .This last bout has also gone to my upper arms and shoulders and i felt that someone had me tied up in a straight jacket,and Boy oh Boy that pain is different to the PMR pain.. Apparantly i am fighting Cellulitus on top.Dr Hughes put me on a 3 weeks course of Antibiotics but nothing helped the pain. He has agreed to Butran patches to help for when the Depomedrone injection starts to wear off but couldn't issue them so i have an appointment with a GP on Tuesday to have a 1 to 1 with a lady GP who i have seen before who is PMR friendly and back from Maternity leave, SO at long last maybe i will get some answers. PMRpro and Celtic and Polkadotcom, Kate Gilbert with her books are my inspiration to keep fighting and many others on this forumi it is so helpful . This condition is taking so much away from me and my Day to Day routine and my body only gives me Quality of life in the higher dose steroid much to my Families Disgust . I hope your pain eases soon . I long to go back to my Bowen Therapy and when i get the treatment to my neck and head i relax and purr like a pussy cat. I just want fellow sufferers not to be afraid to ask questions when they have their Medical Appointments .More PMR Awareness and Research is always needed . Thinking of you trish29

[Amkoffee]

Have you considered that maybe this time your neck pain maybe from something else like TMJ?