osteoporosis

[kingharold11]

Can somebody please tell me what dose of pred is considered to be low enough not to cause osteoporosis I have been on 5mg for the last 6 months tried to reduce slowly but it caused a flare so after seeing my rheumy I went back to 5

[DorsetLady PMRGCAuk volunteer]

Hi,

Don't know if there is answer to that! However, there does seem to be consensus of opinion that 5mg or below causes very little in the side effects column, but whether that includes osteoporosis who knows! Sure there will be a paper somewhere which confirms or denies that.

I see from one of your post about 6 months ago your Rheumy reckoned your PMR had gone into remission. I guess he's changed his mind now. I know you've had it a lot time and very experienced, but are you sure it was a flare and not just a combination of lazy adrenals and steroid withdrawal?

You don't say what level you'd got down to, and although you were reducing slowly was that DSNS or similar and 0.5mg a time?

I'm not suggesting you didn't have a flare, but I felt pretty rotten most of the time between 6mg down to 3mg despite a slow plan and @.5mg a time - but that was mainly fatigue and not a GCA flare. Or maybe, you're just unlikely like PMRpro and can't seem to get below about 3mg.

Sure there will be others along with more answers.

Take care.

[kingharold11 in reply to DorsetLady]

I had been on 5mg for some time so I stupidly decided to try and reduce did it too quick I think rheumy said when I told him forget it for at least 3 months

[DorsetLady PMRGCAuk volunteer in reply to kingharold11]

Good idea, as I said 5mg is a fairly benign dose (in the great scheme of things) so no great rush. You'll get there in the end.

[Jfur in reply to DorsetLady]

I am finding this site so helpful. I have had PMR for 3 years .

I have just read your PMRpro comment , that sounds like me! 3.5mg seems to be the lowest dose I can achieve without a flare up....back up to 5/6mg and start the tapering process all over again. I am reducing by 0.5mg a month. Currently at 4.5.

This site definitely makes you feel you are amongst friends who understand this horrible condition 😍

[PMRpro Ambassador]

It depends on the person - my bone density has barely changed after several years on pred, much of it at above 10mg. In others, even 5mg is enough to cause some bone density loss according to a paper published by physiotherapists (I think, Heron may know, I'm sure she mentioned it).

However - there seems to be some suggestion currently that bisphosphonates are turning out to have feet of clay after all. I shall continue to take my chances on the pred not doing too much damage and calcium and vit D helping - which has been shown to be so for patients on pred.

If I get to 5mg again - it will take some considerable persuasion for me to worry if I can't get lower!

[kingharold11 in reply to PMRpro]

I have as I said been on 5mg for 6 months with no problems then stupidly I decided to try and reduce to 4 I did too quick because last time I reduced when I got to 5 I was able to do it quickly. Not the case this time obviously so I will stay as I am for 2 or 3 months.

[PMRpro Ambassador in reply to kingharold11]

Was it PMR/GCA that came back or was it poor adrenal function that was the problem maybe?

[kingharold11 in reply to PMRpro]

PMR. had tiredness sore shoulders and stiff neck going away a bit now

[piglette in reply to PMRpro]

Professor Cobb, who wrote the recent paper on bisphophonates and was interviewed on the Today programme has sent me a link to the complete paper, but it seems I need a password, so cannot read it at the moment.

In his email he does say "medical knowledge is far from complete"!

[PMRpro Ambassador in reply to piglette]

It is this one i assume:

"ARE THE CRACKS STARTING TO APPEAR IN BISPHOSPHONATE TREATMENT FOR OSTEOPOROSIS?,"

Like the title!!!!

[piglette in reply to PMRpro]

It could be, the name he has given me is Advancing musculoskeletal research and treatment. That may be a dumping ground for all his research stuff though.

[PMRpro Ambassador in reply to piglette]

I suspect what I found was the title for the paper he gave at a meeting.

[piglette in reply to PMRpro]

With any luck the press may pick it up and my GP might read it!! He does not seem to read any medical stuff.

[PMRpro Ambassador in reply to piglette]

Like a lot of his peers it appears!

On another forum this morning a friend is saying that, according to her GP who claims a special interest in rheumatology (works in the hospital clinic once a week) 90% of patients with PMR are off pred in 3 years!!!!!

[piglette in reply to PMRpro]

Where do they get this information from? I am past despairing!

[PMRpro Ambassador in reply to piglette]

The lord only knows - and he ain't telling!

[TooSore in reply to PMRpro]

Mine told me that only 50% of patients get all the way off prednisone and he's happy if I manage at 3mg. I got there last week and he says I'm taking a bit longer than expected with the process and he wants to recheck for RA and wants me to stay at 3mg for 3 month before trying to reduce more! April will be two years for me but only 18 months diagnosed and treated. I've been with this rheumatologist since May. Previous one had me dropping too fast, ignored symptoms and never checked CRP only SED rate - which she ignored as well as none of it was following her plan. The whole thing is rather crazy I think!

[PMRpro Ambassador in reply to TooSore]

That's putting it kindly...

[Lilact in reply to PMRpro]

I need to know more about biophosphonte before I start them after being diagnosed with osteoporosis

[PMRpro Ambassador in reply to Lilact]

If that is a serious request you need to start a new thread - very few people will see it here.

[pammy_hyland]

5mg xx

[Skodadet]

My rheumatologist told me to try and get below 7mg .....whether that was guesswork, informed opinion or an attempt to encourage me I have no idea but I'm happier now I've reached 6mg again.

[PMRpro Ambassador in reply to Skodadet]

It's mainly because 7mg is below the amount of natural corticosteroid your body makes every day in the form of cortisol anyway. Side-effects are due to the excess in the body - so theoretically once you are below that threshold the side effects are minimal as the body doesn't make more than just enough to top it up. My local medical specialist says 8mg - there isn't that much difference, we don't absorb all the pred we take anyway.

[Skodadet in reply to PMRpro]

I find that very reassuring especially since I have osteoporosis now and have opted not to take denosumab for the time being.

[HeronNS]

I read that effects on bone remodelling are observed at 5 mg, and possibly as low as 2 mg but I don't know if there's research to prove it one way or another. HOWEVER we are able to counteract the bad effects of pred on our calcium metabolism and minimize damage. Although I was over the magic 5 mg number for at least seven months between two consecutive annual DXA scans my bone density improved, and all I did was make sure I was getting the right diet, supplements and appropriate exercise. They are no longer recommending the drugs

And, as PMRpro says, we are all different and some will have bone thinning as a side effect and others not, and no one knows why. I was a prime candidate for bone thinning having lost a lot of weight and had a period of inactivity from a broken leg prior to PMR striking, and also having retired from a job which had involved some steady although not arduous physical activity.