My dilemma - cut steroids to zero - or increase to alleviate pain

I hear you!  I have been on prednisone since June this year and now find that I have osteoporosis.  I am still at 9 reducing to 8 mg prednisone with no prospect of being off the drug for a long time, so working very hard to counteract the effects of pred by natural means.  One thing I am not going to do is wean myself off pred if it causes me to become crippled again.  It is a real balancing act. Every morning I feel as though I am putting poison into my body, and yet at the same time I know pred is helping me live a normal life.  I just wish I were at 3 mg as you had been (maybe you do need to go back to that level) and a diagnosis of osteopenia!

Why are you insisting on reducing to zero? That isn't the aim of the idea - it is to find the lowest dose that manages your symptoms. For you that is 3 mg - I assume that's what you meant by "returned at 3mg", 3 was OK, less isn't. That is probably your long term maintenance dose. 3 mg is a very low dose, the side-effects are minimal and that includes possible bone density effects.

When I started taking pred I had a dexascan shortly after starting. It showed osteopenia - at our age, and probably younger too, the vast majority of people are slightly into the osteopeneic range. It doesn't mean you are about to crumble in a heap - it just means you haven't got quite as solid bones as you had at 30. Over 3 years later, after most of that time at well above 10mg/day, I had another scan where the figures were almost identical (it was on a different machine so can't be compared directly). There had been no change due to pred. Neither time was it considered it needed any approach other than calcium and vit D supplements. My vit D was very low - so I took extra vit D to sort that out. Unless you had a dexascan right at the beginning to compare it with you can't know whether the osteopenia is something that has existed since you were in your forties or whether it happened due to pred.

If you continue reducing further then you will very likely eventually return to the same state as you were in after that flare - when you will have a choice: remain immobile or take a higher dose of pred again to manage the pain and allow you to move. A much higher dose for some time, the sort of dose that probably would have some effect on bone density, and with no knowledge of whether the next attempt at reduction would go as well as this last one - they often don't. 

Pretty much the only way to rebuild bone density without other medication is body-weight-bearing exercise, is there any way you will manage to do that without pred? Yes, you are managing with nurofen for now but you are still taking some pred - there is no guarantee that you will remain where you are now with no pred at all. Add to that the fact that nurofen (ibuprofen) is an NSAID, an anti-inflammatory which is why it works and others don't and you shouldn't be taking it alongside pred anyway, but even on its own it can cause gastric irritation and even bleeding when taken long term as well as increasing risks of cardiovascular disease and even liver or kidney disease as well as other problems. One lady was told to take it for her PMR (pred it seems was felt by her GP to be too risky): after 3 doses she was in A&E with a gastric bleed. It doesn't take a lot sometimes. The potential side-effects of the bone building medications are also considerable and I wouldn't choose to take them with a proven diagnosis of osteoporosis. 

To some extent then it depends on your dexascan reading - osteopenia applies to a wide range of T-score readings: between -1 and -2.5 is osteopenia. That means -0.5 is normal, -1.0 is labelled osteopenia. But just a very slightly different reading wouldn't be - and they aren't so sensitive that that sort of difference is particularly meaningful. Mine is -1.3 for my lumbar spine,  -0.7 for my hip, both classified as osteopeneic but a long way from osteopenia - and that was after 3 years at well above 10mg, far far more pred than you have taken in the 18 months it has taken you to get from (I assume) 15mg to 3mg. No 

-one has even considered discussing osteoporosis with me.

Anyway - I would say that continuing with 3mg and being comfortable and able to exercise is a far better way of avoiding osteoporosis. There are far bigger risk factors for a fractured hip - and one of them is being immobile. That will lead to reduced bone density on its own. Keep taking the 3mg tablets and keep active. I just hope you haven't left it too long so you don't need to go back to 5mg to get it under control which is a possibilty if you leave it very long.

 

Thanks very much for your advice ElieenH and Anhaga

I’ll be going back to 3mg for the foreseeable future as you both suggest. It felt as Anhaga states ‘like putting poison in your body’ and I was concerned to not turn the osteopenia into full osteoporosis. Here in Wales it took 14 months from my GP ordering a dexa scan to my getting it. But I suspect as you say Eileen that my bone density has been low since my teenage years. I am in no way immobile and get work exercise or dog walking every day so I am heartened by what you say on the bone building score.

Eileen, could you add to your comment, ‘The potential side-effects of the bone building medications are also considerable and I wouldn't choose to take them with a proven diagnosis of osteoporosis.’

Currently I take one Adcal tablet a day and gave up taking allendronic acid after only four occasions when they affected my eyes. Is there any benefit to taking 2 Adcal’s a day or is there additional side effects for doing that?

Thanks again to you both for the advice.

You are between a rock and a hard place. I have avascular necrosis which may be caused by the Prednisone. The rheumy and ortho doc are both urging me to get off the Pred (since AVN can occur in other joints) but I am scared that going off it altogether will bring on the full scale horror of the early days with PMR. Not sure what to do. I am at 3.5-4.0mg right now. Cannot always tell if my considerable pain is PMR or hips.