pred dose and bone thinning

[CarnationLily]

Hi- I’m fairly sure I’ve seen somewhere that the risk of osteoporosis is greatly reduced if you can get under a certain dose of pred.

But I’m not sure what d dose was being referred to.

anyone able to shed any light?

[PMRpro Ambassador]

The lower you can get, the safer it is obviously but there probably isn't an entirely safe dose for some people. On the other hand, I have been on pred, much of the time at above 10mg, for 14 years, my last dexascan showed very little change in that time,

[mipole in reply to PMRpro]

I was told that I had PMR in Decmber 21. Was started at 20mg of pred. In January of 2022 I slipped on something in the garden, went on my bottom, but I had a thick coat on and a bit of padding underneath that! But as time went on my lower back became very painful. Eventually I was granted an MRI scan, where it was found I had fractured L4 and L5. A few months later I discovered that I had Osteoporosis. There is currently a 3 year waiting list for a Dexa scan in this part of Wales.

After many months had a call from a Osteoporosis consultant. Wanting me to go on Denusomab. shortly afterwards he went back to Pakistan, and I heard no more. But after a call with another doctor just this week in about 10 minutes she explained a lot to me, Then I phoned the Royal Osteoporosis Society, and had a really long conservation with an Osteoporosis nurse, which helped me so much. I have decided to try with the Denusomab. But the pain that I have in my back will be long term I have been told. I am glad to say that I am on 3.5 of Pred at present due to start on 3mg this week using the DSNS plan. I am looking forward to getting to "0", I have recomended this web site ro several people, It has helped me enormously - thankyou. (from Mipole)

[posthinking01 in reply to mipole]

How long were you on steroids?

[mipole in reply to posthinking01]

Since December 21 . I knew nothing about them at all. The Gp did not give me any information about it all. It was just a case here are the pills get on with it. I am down to 3.5 mg now, I asked for a cortisol test recently and was refused on the excuse that my cortisol levels were up and down all the time so no point to have them tested. thank you.

[PMRpro Ambassador in reply to mipole]

I don't think you can blame pred for your spinal fractures after so little time but the type of accident was also significant - as a 4+ year old I had an accident landing sitting down and fractured my skull - the shock travels up the spine very efficiently. A case like yours shows the need for a dexascan within a very short time before starting pred - it would have been obvious you were already at risk. A 3 year wait is inexcusable. The region I live in here in Italy has half a million people, one privately run dexascanner and a cost of under 40 euros for a scan after a few DAYS wait!

[mipole in reply to PMRpro]

If I am honest with myself I think you are correct. I did break my wrist in August 2021, so that sould have sent a warning really. I have always been very active, and we kept sheep until March 2020. I have to accept the denusomab really although I would have prefered to improve my bones the natural way with all the minerals etc that I take. Its taken me quite a while to admit it. I have asked to be referred to a pain clinic, I do get a lot of pain. The doctor I spoke to said after doing this to my spine my shape will have changed (it sure has!) and that likely means I have trapped nerves. I should not feel sorry for myself as there are others out there far worse that I am. thank you.

[Rugger in reply to mipole]

3 years to wait is disgraceful. Here in my part of West Yorkshire it's more like 3 weeks! I have had a Dexa scan every 2 years since 2017.

[mipole in reply to Rugger]

Lovely place Yorkshire. My late mother-in-law lived in Ingleton. Goodness 3 weeks wait!! that would be brilliant. I could go private at £125, but its a way to go, and there is a waiting list for that as well. Thank you for your reply.

[Charlie1boy]

I was told by my GP that once I was below 7mg, I could come off alendronic acid.

However, I’d never had any problem with my bones, and that may have influenced his advice!

Good luck.

[Tiggy70]

Where I live (in the UK) I’ve been refused a DEXA scan on the NHS three times. In the end I decided to go privately as I was desperate to get off alendronic acid as it played havoc with my gut. I know everyone doesn’t have the option of going privately. It cost me £200.

[Wouldlovetorun in reply to Tiggy70]

😟🫣that's such a shame!I'm still waiting too.

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