Cushing’s syndrome/bone degeneration

[Caroline8386]

I have seen a orthopaedic doctor last week who has referred me to a specialist and a dexa scan I did have a dexa last September my gp said they didn’t understand the results I asked if I needed to see a specialist she said no .. I now know my bones are very frail below range for my age sex etc I have just been diagnosed with cushing’s syndrome and the cortisol is like a steroid that is daily ruining my bones does anyone else have this due to this disease I would appreciate any helpful information.

[helixhelix]

Poor you - have you been on cortisol for long? And did your GP not mention the long term effects of it? It sounds as if your GP is not exactly on the ball!

Cushings is I think a reversible disease, but you need to be under specialist treatment. I hope your appointment is not too far away. (But whatever you do, don’t stop taking the cortisol without a doctor’s guidance).

[Caroline8386 in reply to helixhelix]

I’m not in control of the cortisol it’s the tumour making it out of whack my gp hasn’t been on the ball and no mention of effects of it it’s a long road back and forth I’m down for appointment in November I’m not sure I can last that long daily my bones are getting worse it’s a very lonely disease as no one seems to have it although I think many ppl do and don’t know the drs missed it in 2015 they put it down to anxiety although my b/ p was over 200+thanks for your reply.

[helixhelix in reply to Caroline8386]

Oh, sorry I hadn’t understood it was due to internal cause. It must feel depressing. Have you asked GP if there are local groups that you cousl join so you don’t feel so alone?

[Caroline8386 in reply to helixhelix]

That’s ok.. no the gp hasn’t said anything my daughter told me about this site but thankfully today I have a appointment now for August so I’m already counting down the days!.

[Yogi-bear123]

Hi, I’ve got steroid induced osteoporosis and am on a drug called strontium ranelate. It not only stops your bone loss but also builds bone. It’s a bit of a pain to take as u can’t eat or drink any milk products 2 hours before drink it and 2 hours after. I felt funny when I was first on it so took half a dose for a week then upped it.. now fine. U will need a rheumatologist to prescribe it. Good luck

[Caroline8386 in reply to Yogi-bear123]

Thank you I’m waiting for to se the specialist hopefully soon I have a bone tablet risonate but I can’t see that it’s doing any good with all the cortisol going around my body no one has explained anything to me.

[Yogi-bear123 in reply to Caroline8386]

Risonate should stop bone loss but strontium ranelate builds bone as well. Good luck

[Caroline8386 in reply to Yogi-bear123]

Thank you I will ask the specialist for it.

[Yogi-bear123 in reply to Caroline8386]

I think the only real possible side effect it’s to do with the heart. If u’ve got problems in that area it’s best to not to take it. There is another drug that builds bone ( can’t remember the name)