Cured of PMR?

[suracon]

I am 78 now and I was diagnosed with PMR 4 years ago. Started with dose of 15mg prednisolone and gradually through the months the dose was lowered and then upped again and so on. My Rheumatologist now tells me that I would never be on less than 2mg/2.5mg a day for the rest of my life. Recently I was diagnosed with a broken back (not achieved by a fall or any other trauma) and was concerned that this was as a result of being on steroids for such a long time and because I was taking Omaprezole (for a hiatus hernia). My recent DXA scan showed that my bone density was good. Just my spine showed signs of deterioration!

1. Has anyone had similar problem

2. Has anyone been totally free of taking steroids?

[jinasc]

Yes my GCA has been in remission for 7 years.

However, your Rheumy is probably correct, in fact I am surprised s/he has not asked your GP to refer you to an Endocrinologist for a Synacthen Test. The reason for that test, is when you are on pred for a long time your adrenal glands shut down and as you get to lower doses they begin to wake up and work. I had that test when I reached around 5mg (5 years of pred) and it showed my were awake and working.

I would have a chat with my GP about having that test as they are the only ones that can do a referral to a Consultant, not like the old days, when Consultants just referred you to whoever. Clinical Commissioning put a stop to that good system.

Do not worry about being on pred for the rest of your life. I can assure that you will not be the only one.

[DorsetLady PMRGCAuk volunteer]

Like jinasc I have been off steroids - in my case for 3 years - but I would say we both had GCA - not PMR.

There are many who have been on steroids for longer than 4 years - and if you are lower than 2.5mg then very little on the side effects line.

[HeronNS]

Low steroid dose of around 2 should have minimal effect on bones. I'd be more concerned about long-term use of a PPI.

You can counteract some of the bone thinning effects by adding vitamin k2 to the calcium and vitamin D I hope you are already taking, plus making sure your magnesium intake is adequate, to maintain calcium magnesium balance. Exercises to strengthen muscles supporting the spine are also helpful, a physiotherapist experienced in osteoporosis can give advice on protecting the spine, both with exercise and ways of moving in daily life.

[Hidden in reply to HeronNS]

Hi HeronNS, do you know if a man has to continue to take calcium once he is off prednisolone which he has been taking during the pred treatment for PMR. Or is it only woman due to their natural loss of bone in later life?

[HeronNS in reply to Hidden]

Although men do not have the sudden loss of bone mass women can experience at midlife they do lose bone mass as the years pass, although protected by heavier bones to begin with. Your call. Are you otherwise healthy, of reasonably substantial build? Do you exercise regularly and eat a well balanced diet? Do you get adequate vitaminD? Check with your doctor, or a dietitian, but I'd say if you tick all those boxes calcium supplements should not be necessary.

[Hidden in reply to HeronNS]

Thanks H for your thoughts, I'll check with my GP when I eventually manage to get an appointment.

[HeronNS in reply to Hidden]

Haha. At least bones change very slowly!

[Hidden in reply to HeronNS]

[PMRpro Ambassador]

He cannot KNOW you will be on pred for life - pleanty of people with PMR DO get off pred entirely although they often have to reduce at a very slow rate, at the end especially.

On the other hand, be grateful you have a doctor who is not going to force you off pred altogether although you might need more than he thinks - no-one can tell.