osteoporosis from steroids

jenzie06

So my spine xray has shown some funny things. It only took me 4 weeks for the docs to look at it and thats with me stamping my feet. Procedure is to look at it within a week. But because it's me they ignored it for a few weeks. I seem to have a delay attached to my file.
I rang and told rhuemy nurse that minimum that I would expect is an MRI to try and determine what's going on. Lo and behold four days later I get a phone call from nurse saying the consultant wants me to have MRI. Thankfully the wait is only two weeks.
I saw rheumy nurse on tues and managed to get my desperation and frustration over to her (by crying a lot! Not something I regularly do) and she assures me that my MRI will be looked at ASAP. I asked her what the point of my having an MRI is if no one is going to bother to look at the result.
Shame I have to be brought to tears before anyone cares.

My worry is that the results of the MRI won't be that great or dramatic and so the doc won't do anything (has happened before). It seems that if the xray or MRI doesn't show much then the pain should be gone too. I wish...

The only information I have on xray results are from Google and from a friend with brittle bones. Not good enough from the NHS, by a long shot.

salamander

Hi Jenzie, I'm slightly confused by your post. Have you got osteoporosis already? Or are they trying to diagnose it?

jenzie06

No diagnosis as doc is ssssslllllooooooooowwwwwwwww at doing anything for me.
But info from friend and trusty Google points to osteoporosis as only real option.

Beckyboo

I've been on steriods for about 10 years, recently came off them for my 3rd pregnancy, but was on them all through my second.

I got scanned for bone density loss in my spine and hips and I was positive. About 25% bone loss which is apparently osteoporosis. And they put this down to the steroids.

kellerman

Hi,
Yes steroids can cause osteoporosis.So can Thyroid problems and as with me it was possibly chemo.
So basically I have been given drugs to save my life and now my spine has crumbled.
It's a lose lose situation and until I see a rheumy I've no idea what they are going to do for me.
Best wishes to you May

hileena111

Hi,
Yes this happened to my daughter in law {much the same as May} She had an auto immune disease {too early cant remember the name} but to save her life she was on steroids, but on too high a dose for too long and her bones started to crumble was the way it was put. I've never heard the word osteoporosis from her {but shes a very private person} She was in a wheel chair for a long time but is gradually recovering now. The SARCOIDOSIS ..that was the name of the disease is just going to have to take its chance without steroids and hope for the best
Love
Hileena

salamander

Jenzie, haven't they given you a bone density scan (DEXA scan)?

I was on biphosphonates to prevent osteoporosis from steroids but came off them when reports of vulnerability to cancer of the oesophagus from these drugs emerged last year. My Dexa scan showed I had osteopenia which is a pre cursor to porosis. But I still wouldn't touch the drugs for it. I just take calcium and vit D and try to walk every day (not always the easiest!)

hileena111

Hi Sal,
Thanks you've just reminded me....ring the GP and hassle her about my Dexa results....a few years ago I was diagnosed with osteopenia as well so I'm very interested in these results......dont know whats taking them so long
Love
Hileena

tiggernut

I was on steriods for 10 years came off them 14 years ago and now have osteoporosis! Sadly now back on steriods as well, trying to get off of them.
I have a dose of Aclasta which if a once a year infusion for the Osteoporosis.Althouth getting a canular in my arm is a bit of a trual and the nurse did say by next year there will be a different drug available which is an injection twice a year.
Anita.

jenzie06

I've taken steroids on and off for years.

Had a DEXA scan back in April. Got the results through the GP receptionist who said it was fine.

My Rheumy dept are terrible for sending you for tests then never mentioning them ever again. What's the point?!

I have to say that by the end of the day or if I've been bent over for a few minutes that my back is burning and it hurts to breathe in. A little concerning... Will have to make my 16mo son grow a bit so I don't have to bend over or pick him up anymore (although he's very good at getting the washing out of the machine!)

salamander

Hi Jenzie, if your bone density scan is ok, why are they saying you have osteoporosis? Still confused I'm afraid :???:

jenzie06

DEXA scan in April was ok.
Since then have had increasingly painful backache. GP said it was muscular. I mentioned it to Rheumy (in August) who sent me for an xray as a precaution to check for osteoporosis as I've been on steroids for ages.
Xray showed vertebral bodies becoming wedge shaped but with no visable fractures and spine has become curved.
I've not seen Rhuemy since. But Google and a friend with brittle bones (who is a back guru) indicate osteoporosis. But no definitive diagnosis.
Having MRI next week to see what the dickens is going on.

Is that any clearer? Sorry for confusion.

hileena111

Hi
I dont know what others think but until you get a final diagnosis i wouldnt assume its osteoporosis. Osteoporosis is one of those things that you dont usually feel.....just fracture much easier.
I have a curve in my spine as do others here but that is scoliosis
Love
Hileena

salamander

I'm inclined to agree with you Hileena. As far as I am aware, it is something that happens slowly not quickly and if scan was ok in April.....