3 & 1/2 years with PMR and still on 15 mg. prednisone

[Linny3]

Hi Everyone

I know many here have been on prednisone for quite awhile.

I was wondering if anyone has been told or have found thru research, why some of us just can't seem to reduce past 15mg. Any common denominator etc?

Is there Any reason why some of us just can't get past this illness?

I have a friend, male, who contracted pmr . He was on 15mg pred. for 6 months, slowly tapered and after about another 6months was on 5 mg. Then 6 months of 1 mg. then went off all together and has been fine ever since. I realize we are all different, I just wondered if anyone has seen research and to why some have an easier time of it with this disease.

Love to hear your thoughts

Thanks

[PMRpro Ambassador]

Never been looked at to my knowledge.

Personally I am sure there are several versions of PMR - whether that means that they have different underlying causes I don't know. PMR is, after all, not the actual disease, it is the name given to a set of symptoms that are due to an underlying cause. Pred is a catch all - works for all varieties of inflammation but their use of "steroid sparers" is a clear indication to me that there are different versions: some do well when methotrexate is added, some don't, some get off pred altogether, others may get a bit lower and yet others just suffer with no benefit. Even tocilizumab for GCA only works for half of patients - that is because we know there are at least 3 mechanisms that create inflammation in GCA, tcz only works on one of them, has no effect on the other main one and so those patients who have both going on still need pred to manage that. It isn't clear if tcz works for all PMR patients - not enough work done on it yet.

Men commonly do better with PMR and pred in all ways - women are far more likely to develop autoimmune disorders than men anyway, the ratio in PMR is more than 2 to 1. Some have a hard time but they are rare. But whatever the cause of PMR - it varies between patient. I know that stress really makes my PMR flare even though I am a very down to earth person and take everything in my stride - but when my husband is ill and I have to traipse to the hospital to visit him or do everything myself because he can't - I flare. That is the physical aspect as much as the concern. And if emotional upset turns up as well (other than him being ill again), light the blue touch paper and retire to a safe distance...

[Linny3 in reply to PMRpro]

thank you for your reply

I don't think I give stress enough importance in dealing with this disease.

[PMRpro Ambassador in reply to Linny3]

Don't think anyone does - but I even heard Prof Mackie mention it recently!

[suzy1959]

I am certainly interested in this question too.

I have had PMR for over 8 years and never able to get comfortably below 11mgs. so far.

I wonder if people like me are the ones that never get off the Pred.? Sobering thought.

Or maybe we could ask who the people are who never get off pred. and are there any common denominators?

At the very least it might help to identify this group so that the doctors would get off our case and offer more support rather than always trying to make us taper and then flare.

[Linny3 in reply to suzy1959]

Thanks for your reply. It is probably wishful thinking of us to think that kind of study would be done.

[PMRpro Ambassador in reply to Linny3]

It all comes down to money. And where would you look for money for this sort of thing? Prof Mackie has a couple of relevant studies (even I think they are relevant as a patient!) but no funding.

[nuigini]

I seem to be on the long journey as well Linny and sympathize with you and other in the same boat. It's been 6+ years for me and I've never got below 10 mg. Whether it's recurrent PMR or flares due to stress, doing too much, adrenal insufficiency, or whatever, something always seems to knock be back every so often.

All I wish for at this point is to have a doctor who understands that this can and does happen with some PMR patients.