Duration of PMR before it burns itself out

" My problem about being on Pred is that it will thin my bones and lower my immune system"

I have been on pred for 8 years, a lot of the time at above 10mg. I rarely have colds and have never had anything else infectious and my bone density has not changed significantly - I only take calcium and vit D supplements.  Neither necessarily happen - lots of people on the 3 forums have had the same experience.

There is no virtue in taking too low a dose - you have to get the benefits of the pred to outweigh the downsides. If you are really well at 7mg stay there for now - it is a low dose, about the same amount as the natural corticosteroid your body makes and which is essential for life 

To be at 7mg after just a few months is very good - and if your rheumy has a crystal ball he might make a fortune! There is no way he can say at this stage how long you will need pred - but other than that he sounds to be a good one and hang on to him: slow tapering and not tapering too far! They are rare birds!

I must admit I was in Florida when all this flailed up! I'm fortunate to have medical coverage when there. My Family and Rheumy docs were both female. Funnily enough all four docs in the Arthritis Centre  are female. Yes, I was very pleased with her consultation but she did want me to think about "infusion" something for my bones, which I gracefully declined.

 

BTW in my case Pred thinned my blood when on 20mg. When I went for my blood test I bled profusely to the point that the nurse thought I was on Warfarin! Also I had slight nose bleed, and after a small paper cut bled for ages. After more web research found out that could happen. I'm now back in the U.K. And seeing my Family doctor at the end of this month. I've brought back all my reports and hopefully I'll be able to get a prescription for Prednisone! 

Thanks for taking the time to reply to my first rambling note. Good luck with your problem. I'm so pleased to have this forum to share thoughts as it can be quite worrying and I'm sure unless you have experienced the pain it must be difficult to understand. 

Freda,

Thanks for sharing.  It's so wonderful to have a community to share with.

We're all in this together.

"I'm sure unless you have experienced the pain it must be difficult to understand"

That is the only slack I'm prepared to cut rheumatologists! But as doctors in the field they should have learned by now that is is often just RA without joint damage. And a far narrower spectrum of medication!

Eileen,

How do I know I have PMR and not RA.  I had positive ANA titre speckled pattern.  Thx

I think I'm right in saying that ANA is usually normal - medscape thinks so anyway:

"Antinuclear antibodies, complements , rheumatoid factor, and anti-CCP levels are usually normal. Serum interleukin-6 (IL-6) level is elevated and often closely parallel the inflammatory activity of the disease; however, the test is not readily available in most laboratories."

If ANA is done in a query PMR patient it is to rule out other potential causes of the symptoms - there are several illnesses that produce polymyalgic symptoms. The Royal College of Irish Physicians says:

"Antinuclear antibodies are autoantibodies directed against a variety of components of the cell nucleus. Most healthy people have a low ANA titre (defined as < 1:80 in Irish laboratories). ... The most common autoimmune disease associated with a positive ANA is connective tissue disease (CTD)."

It depends on the titre of the result - but usually they don't do the further analysis unless the titre is high. But I do have to say - if I had been given a result for ANA I would be asking the rheumatologist why he thinks you have PMR and not one of the connective tissue diseases. While pred will help the symptoms it is rarely the best approach.

Today, I go to Yale to an integrative health doctor to see what the latest research is over here on adjuncts to prednisone.  Hopefully they have some more ideas in addition to the curcuminoids which help some.  I'll keep you posted when I get back.  This practice is respected so hopefully they can bring me up to speed on the latest do's and don't's.

Please keep us informed!

Thanks for the lengthy informative  response.  My titre was 1:160 speckled pattern.  If this is connective tissue disease how would they treat it?

ill drive my poor rheumatologist crazy.  He called today and was so happy I was doing better back on the methylprednisolone.

Corticosteroids work there too - but there are other drugs that help that doctors get less iffy about you being on long term! It is really worth him considering that as different connective tissue diseases respond to different drugs and in some cases it is important because they can cause organ damage when not well managed. That is a weak borderline positive ana result and maybe your doctor thinks it is too borderline to be concerned about but he should repeat it to see if it changes, which does happen.

Ok, thanks.  I'll ask him if he can repeat it.  Worth looking at.  Also wonder if a differential diagnosis could be adult growth hormone deficiency since I was on it for many years and went off cold turkey?

Absolutely no idea at all - but I'm assuming your rheumy does know all about that? I really don't know if there are any long term risks of GH therapy that might be relevant. Out of my field I'm afraid.

Rheumymdoesn't know.  Endocrinologist here doesn't either.  Was treated 2000 miles from here.  May need to go back to that endo to get some answers.

No - I meant knows about your history of GH therapy, in that you have told him?