Facebook Live: Osteoporosis

[Aribah-NRAS]

Sarah Leyland, Osteoporosis Specialist Nurse and Clinical Adviser at Royal Osteoporosis Society will be in conversation with Clare Jacklin, on Facebook Live Event on Wednesday 27 July at 7pm. The Royal Osteoporosis Society is the UK’s only national charity dedicated to bone health and osteoporosis. Sarah will be presenting information on osteoporosis and fractures as well as the link between corticosteroids use and having rheumatoid arthritis. Pre-submit your questions 👉 bit.ly/3nZq2F9

[Fruitandnutcase]

I don’t use Facebook but it’s good you have pointed out the link between rheumatoid arthritis and osteoporosis.

Unfortunately none of the consultants and doctors I saw ever mentioned a link or asked if there was a family history etc, the endos I saw for Graves’ disease (overactive thyroid with antibodies) didn’t either.

I feel very sad - and annoyed - that I wasn’t advised of the links when I still had a chance to work on my body. Now I’ve got osteoporosis!

So I’d advise everybody who can to use the link

[sunnyweek in reply to Fruitandnutcase]

Sorry you've been diagnosed with osteoporosis. I've never been told of the link either and I've been diagnosed in the last two weeks, severe in my hip -3.0 and -2.5 in spine. She also said its the steroids. Hopefully we'll learn more from this facebook live.

[Aribah-NRAS Partner NRAS in reply to Fruitandnutcase]

Hi there, you do not need a FB account to watch the live. Clicking on the button in the link will direct you to the live event at the time of broadcast. Alternatively, it will be uploaded as a video on our YouTube channel YouTube.com/nrasuk. Hope this helps. Best wishes, Aribah 😊

[Paula-C]

I've recently found out that RA can cause osteoporosis.

[MJSlide1958 in reply to Paula-C]

Actually, I have been diagnosed with Osteoporois since I went into Menopause at 50, but never before Menopause as I was having my yearly healthchecks and bone scans! Yet my daughter was diagnosed with RA at the age of 17. I am not on any meds but do take Vit D3 and Calcium. And I still have not been given a Osteo Clinic appointment. The Osteoporois is main in my spine. I am 64 this year, I still have a straight back, no pain, but when will I go downhill?? I have stomach problems and would be quite concerned about taking tablet forms of Osteo treatment and hoping there may be another treatment for Osteoporois?Thanks everyone

[Paula-C in reply to MJSlide1958]

It's a friend of mines who's had RA for over 20 years that's been diagnosed with it, she's not really been on steroids either. You learning something new about RA all the time and what it can potential do to you. Learnt a few months ago that the comedian Bob Mortimer, he's got RA, it's attacked his testicles, he's got testicular vasculitis. Then people think it's just a few aching joints.

[MJSlide1958 in reply to Paula-C]

Thank you Paula. So sad about the comedian! Hope you are doing well.

[bienassis]

The more publicity about Osteoporosis and the link with Rheumatoid Disease the better.

I have recently been diagnosed with osteoporotic fractures in my lumber spine - thanks to the quick thinking of a specialist rheumatology nurse during a telephone consultation. She advised an emergency assessment at the local hospital's Emergency Department - immediately. I was picked up by an ambulance and taken to the hospital where the assessment revealed 4 lumber spinal fractures - some of which were historic but, until then, unsuspected.

I have started a course of treatment by sub-cutaneous injections of Denosumab (60mg every 6 months). At the time of the first injection I had a long consultation with the nurse who explained the thinking behind the treatment and how my bones should strengthen and the risk of fractures be reduced.

In a few weeks time I shall be 87, but it was in 2002 that my GP sent me for my first Dexa Scan. I was considered vulnerable because of the Rheumatoid Disease - diagnosed in 1967. From 2002 until 2014 I took preventative Alendronic Acid tablets. No follow-up was recommended. In retrospect, this does seem very odd.

I would hope that this is no longer the case.

[barbieg]

I have just been diagnosed with Osteoporosis. I haven’t been told of the link with RA either which I’ve had since 2004. I’ve only ever had steroids twice in all this time so it’s certainly not over use of steroids with me. I’m still awaiting any suggestions of medication from my RA consultant who is once again ignoring me. A long story, hence me changing consultants. My GP surgery sent me for a Dexa scan and then wrote to my RA consultant for a treatment plan, so I’m piggy in the middle.

[Runrig01]

I have ankylosing spondylitis and prior to diagnosis was getting yearly dexa scans privately. My T score always put me in the osteopenic range at -2.1. Once diagnosed I was told by the endocrinologist that the AS meant the readings in the spine would be inaccurate, due to the extra bone being made. I’ve since spoken to the uks leading Dr for AS confirmed dexa scans could be done just using the hip measurement. However despite informing nhs radiologists and rheumy, they continue to include my spine reading. This means my osteopenia is “improving”, unfortunately I don’t get the full results, just a letter confirming it’s in range for my age now. I developed identical stress fractures in both ankles 18 months apart, due to Alendronic acid, so it was stopped. Only takeAdCalD3 now. Uncertain what’s best.