Are you over 45, have RA, (female/male) and were diag... - NRAS
Are you over 45, have RA, (female/male) and were diagnosed before you were 45? If so, please take part in this poll. Tick all that apply
my bone density was excellent so I have not had another one.
Mine too! Bone quality excellent also .. Just that joints that let me down. 😐
Because of a fracture when they replaced my knee (at 49) I was sent for one but came back OK. Farm
I had one when I broke the same wrist twice close together this was over 10 years ago
Please tell us:
Who designed this poll?
Why?
Who will benefit from it?
Hi Matilda7,
The pole was created by our CEO, Ailsa. Her reason behind the pole is as follows:
"I read a research paper from the States which reported that people with RA were not being adequately screened and treated for possible osteoporosis, which is a risk factor for people with RA, and wanted to get a feel for whether or not this might be similar in the UK. This poll facility is a good way to quickly test the question and see whether this might be an area we should probe in more detail."
Ailsa has also been invited to speak to staff at the National Osteoporosis Society and the findings from this poll will help with that also.
Kind regards
Emma
Thanks for the explanation.
In future could I suggest you give us the explanation before asking us to do the poll? Then we can decide if we wish to partake. It is good practice to seek informed consent even for an informal poll.
Hi Matilda7,
Thanks for your suggestion. I'll forward it to HU as unfortunately the title only has a 140 character limit! In the meantime I'll try and put something in the comments for future polls.
Kind regards
Emma
Many thanks!
Looks as if Ailsa is getting lots of useful information.
I had feet and hand X-ray but no dexa scan. Never new I could be at risk of osteoporosis
Same here
I had major fall, broke pelvis and hip and went for dexa scan about 3 months later, have osteoporosis but spine ok
I've had bony erosions due to the RA progressing in my wrist and had to have it fused, is this relevant to osteoporosis risk too?!
I've had one DEXA scan, but only because I went for a pre op assessment and was told I'd shrunk 3inches in height (i'm 51) and if I'd been on steroids (yes I had and a big dose!) I better ask for a dexa scan.
No mention of osteoarthritis or dexa scans from Rheumatology. When I was started on steroids I asked about calcium supplements and consultant said I wouldn't need them if I was on steroids for 6 months.
Never had my bone density tested I'm now 57 and had ra since I was 41. I feel after seeing this it should be a matter of course. I am due to have a mri scan because my bones in back are crumbling as is my hip hands and one wrist osteoporosis in back osteoarthritis in wrists etc. I now wonder had I had this test previous would I have got to this extremely painful stage before it was noticed
I've had 3 dexa Scans and all were fine but I take Calcium tabs I've had RA for over 30 years now
I had my first Dexa scan several months ago 26 years after being diagnosed and because I have COPD so take steroids when needed for that plus the steroids I have taken over the years for my RD. I am overweight so they said they couldn't do the scan properly so they would do the best they can, since then I have heard nothing.
Have had X-rays on all parts of my body aswell as ultra sound on my feet which I am currently suffering very badly with.Diagnosed 7 years ago but never been offered a bone density test.I was not even aware of the likehood of developing osteoporosis.
My husband (a GP) is the only person who has mentioned bone density to me - although my rheumy team are mostly fab about everything else.
I was sent for a Dexa scan by rheumy 14 years ago due to long term steroid use. I had OP in hips and femur, have had regular tests since and treatment. Just had Zolendronic acid infusion, first of 3, annually.
I have regular Dexa scans courtesy of the NHS. No sign of osteo after nearly 18 years of RA and no loss of height etc. I knew about the risks by way of my own research but the bone density scans are a regular matter of course as part of my ongoing treatment for this disease.
I have had one dexa scan and was due for another but moved house. Was told l had some osteoporosis in my lower spine. My new rheumatologist has not mentioned it at all. I will mention it myself at my next appointment in 2 months. Started with palindromic rheumatism at age 35. Only been on dmards for 8 years. Not on steroids for very long. I am now 74 years old. Stable for a few years now.
Sent for dexa scan after fracturing 4 ribs coughing - only found when chest xray done because of chest pain esp breathing in & out with persistent cough... fractures already healing - I had told my family it really hurt!! Evidence in the past of previous healed fractures that i didnt kniw about.Also further rib fractures after a very simple fall a few months later.
Turned out I had extremely low Vitamin D levels (dexa osteopaenia of femur only) - have had no problems in past 18 months since on Adcal (but no chest problems either)
Think we also need more awareness of ourvrisk of low Vit D. I get plenty of sunshine & have pale skin and always firgetting sunscreen, so in theory should have been ok...
My Gp checks my vitamin D yearly and it's always normal. No broken bones or problems seen on X-rays apart from rheumatoid. So I guess they didn't see the need for a scan.
Also have bone density & Vit D blood tests taken now and then.
Hi all mine is done every 3years
I've had 2 scans and have an infusion once a year for Osteoporosis. Also just been diagnosed with OA in my back.
HAD RA SINCE 35 NO SCANS FOR OSTEO HAD BROKEN RIBS SEVERAL TIMES ONCE HAD THEM BROKEN THRU JUST BEING HUGGED ALSO HAVE FORESTIER'S DISEASE BUT NO EXTRA X-RAYS TO CHECK HOW MUCH OF MY BODY'S AFFECTED BY THIS COS I CANT TAKE VARIOUS MEDICATIONS JUST BEEN PUT ON PAIN KILLERS AND LEFT IM NOW 51
I had a second bone density scan following breaking my bumper arm in a fall, and it came back as borderline. Between us my rheumy and I decided I wouldn't take any extra meds, but I'd try to walk more and remember to take fit d and calcium more regularly.
Strangely enough I was diagnosed with osteoperosis before rheumatoid arthritis because I asked my GP to refer me for a scan because my mother suffered with severe ra but was never warned of the possibiliy of osteoperosis developing alongside. Consequently she suffered a spinal collapse due to undiagnosed and untreated osteoperosis. My osteoperosis was, therefore diagnosed early and treated early. So far I have not had any breakages but my bone density has still decreased over the years but not as rapidly as it would have left untreated.
To add to my reply above, I must say that women are also more likely to develop osteopetrosis if they have an early menopause which was the case for my mum and myself aside from the fact that my mum had rheumatoid arthritis from age 35 and I started developing symptoms at 40.
I had a dexa scan in 2010 but nothing since, no conversation about it, nothing.
Hi
Thanks so much for taking part in the poll. Our team will promote it a bit more whilst I'm away on annual leave but I am aware that a number of people have asked for more information on this subject and we will put together an information sheet in the autumn with help from our friends at the National Osteoporosis Society, so please bear with us. If you need urgent advice, please contact your GP or rheumatology team, or visit the National Osteoporosis Society.
I had an Osteoporosis diagnosis in autumn 2015, after 4 Vertebral fractures, but not after a fall. My spine, and right hip are so painful what with Osteoporosis, RA, Osteoarthritis and Vasculitis. I've had RA for over 30 years, Mum and gran both had Osteoporosis, and lots of high dose steroids, so my consultant has always been concerned about my risk over the years.
My rheumatologist has never mentioned dexa scans though to be honest I'm not surprised as 4 year's ago I constantly complained about chest pain,coughing and breathlessness and they took no notice of those symptoms. Two year's ago a visit to a locum docter who ordered numerous tests confirmed that I had pulmonary fibrosis!
I saw an orthopaedic surgeon earlier this year because I have rheumatoid feet who told me that he thought I had osteoporosis in my spine, he arranged a dexa scan and yes I have it in my neck, spine and left hand. I've had R.A.since I was 42 . Linda
My bone scan was 52 yrs ago
I am Herms123, coming up to 80. years old have suffered with all these problems and more. my first serious injury happen at work in 1969. The year of the moon landings I ended up with a trapped sciatic nerve trapped in my lower spine. At that time operations were in the experimental stage, I had a 13. year wait for an operation when it came it was attached with a high risk factor of 78. per cent of not working. Being in so much excruciating pain I decided to go for it, spent nearly three months in hospital first part was gentle recuperation in bed whilst gentle physiotherapy was applied after six weeks I gradually got up and carried on with increased physiotherapy including learning to climb stairs. in the early days and years that followed I went to hell and back whilst still trying to hold down a full time job, we had to live. over the years I gone though all the various stages of Arthritis, osteoarthritis and degenerative joint disorder. whilst working all spare cash went on a very wide and variable methods of treatment, often the weird and wonderful that can up in medical papers of the day, lots of conversations from work colleges, have tried this or that private physiotherapy such as the rack, acupuncture that did nothing for me. Relaxation methods soft background music with a swinging coloured glass pendulum, very good for reliving tension but like all these had a short period of lasting, I had countless x-rays four MIR scans, the list is endless, am I any better physically no, tired exhausted have so many operation needed but will I get the results I need, short term maybe long term lead to more problems. how do I deal with it all, years of learning mind over matter yes it hard even so when one is retired, one has to keep re-inventing things to keep the mind fully occupied, I do art, photography when I can, write children's stories, poetry plus always looking for a new project by thinking outside the box. yes the joints still give hell but for a while I can go into a fantasy world for a while and leave some of that heavy pain behind, any relief is better than none. Hermes
I take experience seriously.I m 55 what do u recomend.I take sulfas n prenidsone lowest dose.Pain is overwhelming.However I must last at least until my late 70's due to family needs.Any suggestions for RA
management?.You been there ,can you make it to your age with this meds.Meds scare me.Is like they ll actually damage my kidneys or liver.
However if I dont take them I can hardly move!.Pain is too muchhhhhhhhh !
Sincerely worry,
RA pacient looking for wise advise.
Hermes123
Very difficult to answer questionnaire? I have a number of arthritic joints, hands elbows ankles feet as well Osteoporosis. T o knowledge I have never had a bone density scan, I had four MIR scans all for pacific area's of damage, so many x-ray's, pain management courses of various degrees.
But this week has culminated to the perfect storm of getting to be taken seriously after so long. Tuesday night / Wednesday morning I hit the roof with pain by 7am. I could not stand it any more, so I called 100. they went through the standard phone checks to see if I was having a heart attack? then went on to the Pacific's of my pain problem, the call centre ask me if I had any Aspirin I said I had one, she ask me the strength I checked 25mg she said to take four more right away, she was now contacting the Para Medics and I was to tell them about the aspirin as soon as they arrived.
To cut this short all checks done, decided chest pain was cursed though anxiety of the pain I had been suffering. They phoned my medical centre ask for an appointment to see a GP. right away, as soon as the medics left I visited a GP. who prescribed a trial period of patches for one month, after which he wanted to assess the situation.
The following day I already had a physiotherapy appointment, when I arrived it was suggest I needed some more than physio, she was suggesting a specialist pain clinic, explained what in full what it entailed, it was nothing like what I had been involved with before and sounded like the answer to my prayers, she had discuss it with a senior college between them decided why nobody had pick up on this sooner. So here's hoping. Hermes
Not mentioned to me as far as I'm aware. I have had bone density done via Royal Marsden London, while under their care for the Tamoxifen drug trial some years ago. I did have good bone density then.
I’ve had RA for 20 years and this has never been mentioned to me!
I only had a Dexa scan after suffering vertebral fractures as a result of being on varying doses of prednisolone, that was 20 years ago (at last) and I have taken residrenate/calcium since.
Following a left ankle fusion in 2008 I had a stress fracture of my right fibula and was found to have osteopenia. Following five years of treatment with Alendronic acid my readings are within normal limits. Never had dexa scans prior to the fracture despite over 20 years of steroids. Diagnosed at 23, now 67. Now have scans 3 yearly.
Hi Emma I have had a few Dexa Scans now and each time I have had them, the results tell me I have 'Osteopenia' - What is the difference between Osteoporosis and Osteopenia?
Hello MjRock. You may find the articles on our website helpful in answering thisnras.org.uk/osteoporosis-in-ra
there is also a short video explaining the treatment of both osteoporosis and osteopenia.
If you would like a copy of the article that featured in the NRAS Members' Spring 2016 magazine on the topic please call 0845 458 3969 or email enquiries@nras.org.uk to request a copy
Kind regards
Clare
