Last October went to work and my back locked never had any problems with my back before I am on 25mg mtx and 40g every fortnight of amgevita doing great then this happened to my back and my world completely changed. I had been on Amgevita for 10 months it stopped my uveitis in its tracks felt great body felt balanced how things can change so quickly. Was off work because of the pain in my back kept going back to my GP not interested said it could take 12weeks to get right something didn’t seem right to me it just wasn't improving. I have private medical insurance so rang Aviva and got booked in to see a spine consultant and had a MRI scan and turns out my lower back is in a trouble state .The consultant was very brutal and told me I had a back of an eighty year old and all I could do for the rest of my life was sit for ten minutes and walk for ten minutes I could never work again and showed me some laminated pictures of denigrated tyres and told me I was the worst one on the page bearing in mind I had no trouble what so ever with my back before. I was in complete shock this had all been going on for years without me knowing about it .I decided to ring the rheumatology secretary up so I could have a telephone appointment with my rheumatologist she arranged a dexta scan for me turns out I have Osteoporosis because I had been taking Lansoprazole for years and your body can't absorb the calcium in your body.So if you have been on steroids for any length of time or ppi for stomach protection please find out what state your bones are in don't be like me and be ignorant .I did get a second opinion about my back and the second consultant disagreed with his diagnosis and said I had been living with this back for a long time with no trouble and thought once I could get the pain under control I could lead a normal life again.So I have been under a pain management doctor who has just done some radio frequency ablation on my back just had it done last Thursday still in alot of pain because of injection site could take up to six weeks before I know whether it has worked for me or not fingers crossed early days.I have suffered with RA for thirty years don't take your bone health for granted your rheumatologist can arrange a dexta scan.
Osteoporosis and RA: Last October went to work and my... - NRAS
Osteoporosis and RA
When I was put on steroids in 2012, I asked my rhefor a dexa scan, she refused saying at 47 I wouldn’t have an issue. Thankfully there was a company near me who did them privately without referral. Do I did that, which showed I was osteopenic. I attended 2yrly, then yearly and always similar results. My femoral neck was -1.91. Unfortunately I have ankylosing spondylitis, so the spinal readings are inaccurate due to new bone forming, so year on year they get better. I took Alendronic acid for 2.5yr, bu got identical stress fractures in each ankle, 18 months apart, which they blamed on the AA. So it was stopped, the private endocrinologist recommended alternatives to my gp, who said rheumatologist would be best placed to decide. In 2018, I had a dexa at the local hospital, which gave a T score of -0.7, which I’m skeptical about, but gavce not had any alternative prescribed. I also see an endocrinologist at Barts, who has organised one with them in a few weeks, so will be interested to see what it says. The first one my femoral neck was almost transparent, n one particular area, which she said was very concerning. So hopefully will know if my osteopenia really has reversed, or if they also used the spinal readings, which are supposed to be ignored in AS, and I did inform the radiologist, who said she’d never heard of that. Yet there is many articles hat havd researched it. Like you my spine is in a mess, with fusions, slipped discs that have calcified, along with many other issues, mainly due to having AS around 25yrs before I was diagnosed, which is why I have fusion.
Runrig01I think people who are taking medication that can contribute to bone density loss and got a history of Osteoporosis in the family should be allowed to have a bone density scan automatically in their 40s.Doctors need to be better informed about Osteoporosis people are living a lot longer now a lot of back fusion are done on people in their 80s.A.A is found not to form the right sort of bone building material it is brittle bone that it is building up easy to fracture need to really do some research for the right treatments for your situation eg. Calcium carbonate which is offered at the GPs needs acid in the stomach for your body to absorb it Calcium citrate is better if you take ppi as it doesn't need acid to absorb it in the body but that is more expensive than Calcium carbonate so not offered to patients. Good luck with your journey.
In 2016, the private endocrinologist suggested hormone repracement, Raroxifene or strontium Ranelate. Unfortunately since then I had a severe stroke at 52, due to an adrenal crisis, which means they’re reluctant to give me HRT. Thankfully I breezed through the menopause with little issue. Hopefully the Barts endo will come up with a solution. 🤞
I think eventually I will need to see an endocrinologist, I have osteoporosis particularly in my spine. I don't put on weight, I don't lose either, but my neck has a bulge in the thyroid area. Had an ultrasound over a week ago on neck. GP has not called me with result either.
What do you think about Higher Nature Sea Calcium, have a read and compare, is kind on stomach too.
Don’t despair…I’m that 80+ year old with a rubbish spine & Osteporosis…and I’m doing OK…so if you ever see him again …tell that Consultant not all Octagenarians with OP are invalids or consider themselves disabled.
About 25 yrs ago I had a bad whiplash injury,& had successful surgery on my cervical spine …with a bone graft taken from my hip…..& although my spine is messed up…..until about 3 years ago I was fine …I had regular Dexa scans prescribed by my rheumy that were all OK.
Then I had a fall..not just a trip..but a real crashing fall, …& like yours my then GP took little notice & made me wait 5 weeks before he would refer me for an X-ray - which revealed 2 compression thoracic fractures…& Osteoporosis. But only a couple of years prior to that my Dexa scan was described as that of a “much younger woman,”
So I do wonder if these scans are as useful as they are made out to be?
I did take Lanzoprazole …but only for a couple of years,& I only had the odd dose of steroids because I was found to be allergic to them….so no OP was detected until the scan after the fall.
After that fall I was on a Biophosphonate for three years ….no problems appeared but whilst trying to rule out other problems ..I stopped taking it & I’m just deciding whether to continue with other OP drugsl
I’m not 100% pain free……for me any pain from RA or OA is worse.I can still get out & potter in my garden & go for walks….the one thing I can’t do is just stand still for very long…but for over 80 I’m a lot more mobile than many friends of my age with no diagnosed problems.
Do call the Royal Osteporosis Society. I had a very informative chat with one of their nurses, who took a long history from me & gave me good advice about a drug my rheumy nurse was pushing me towards. ….& I didn’t take it,
I do hope you get some helpful treatment very soon.
Thankyou for your reply.
I have had a very similar experience - a dexa scan which was read as being of a much younger woman (30years younger) - then a fall which was reported as showing osteopaenia (perhaps seeing what was expected?) and disc protusions and impaction on the nerves. A repeat X-ray suggested no osteopaenia, and advice from the Royal Osteoporosis Society - very helpful - made me able to refuse the offered treatment.
What is name of that drug the rheumy nurse advised on, I need also to seek a Osteoporosis drug to ask GP about?
It was Prolia……at my age I didn’t think it was the answer & the ROPS Nurse agreed with me.
I have just seen rheumy & he understands my reasoning & says I can sort out present spinal problems & make my decision then.
thank you
But a word to the wise…ask your doctor what he suggests you try for OP don’t have a fixed idea in your head what you want…….I think in my case the nurse who was pushing a certain drug was new to the rheumy team & didn’t realise that my rheumy -unlike some of the Rheumies on the team - does like to be involved in the choice of OP drugs…& does listen to his patient’s opinion.
Thank you and noted. You have a good rheumy, in London, I do not think they have time? Are you out of London for Rheumy Dept?
Yes I’m now out of London…but it is very,very busy where I am, so when I have something like this to decide I see my rheumy privately, which the rheumy nurse may not like.
But my money, & my pain that needs sorting, so my decision.
same here, my 32 yr old daughter has RA, and now i will need tp pay for her 2nd op she has bilateral ovarian dermoid cysts again and is so depressed, all she wants is a normal life and have a baby. she works 40hrs a week as it is to pay her living. life ain't fair! If only I could swap with her, any day!
For me your question and the replies are so very interesting.
In Nov 21 I had a rear end car shunt and had to have the tailgate replaced and rear bumper straightened. When they removed the tailgate it was found that the driver side rear crash bar was cracked and had to be replaced.
In Mar 22 I put my hand up to get a mug from the kitchen cupboard, felt and heard 3 snaps in my back, hugely painful. Stupidly I did not go to A&E or contact the GP, during the pandemic. In May I did contact the GP, diazepam for the spasms, strained a muscle. Still in pain then had xrays with a result of crushed fractures of L1 and T9 vertebrae ,more relative to a rear end shunt. I was informed I had Osteoporosis even though my bone dexa scan was fine. I haven't taken Alendronic Acid as I am sure the rear end shunt I had is the culprit for the crushed vertebrae fractures; trauma fractures. Still very painful so off to see a MSK advisor in May to try and sort it out.
I will call the Osteoporosis Society. I hope you get sorted also Bhlen1963
There are many more different & up to date drugs for OP than Alendronic Acid which is why I really do advise that anybody newly diagnosed & unsure about the way forward should call the Royal Osteoporosis Society. I had a long very informative chat with one of their nurses….& afterwards she sent me literature on each of the drugs we had discussed, which explained why for me some drugs were contraindicated….so when the hospital rheumy nurse mentioned a drug I knew what it was & could discuss it with some knowledge…not have to just accept when I was just told the good bits.
OP does need taking seriously……so we need as much knowledge as possible to deal with it - because unfortunately it doesn’t just go away.
Good Luck wth your future treatment.
Thank you for your reply AgedCrone.
After seeing my Rheumy Consultant he has advised me to have denosumab, a six monthly injection. My concern is even though my dexa scan is normal; also I have been discharged from the Osteoporosis clinic (which I had never been seen in apart from the dexa scan). But I have had a back trauma in a rear end car shunt. I have never been differential in not wanting to take a drug before, I definitely wish to know if I have Osteoporosis before I take a drug , then get my back looked at to see if the two crushed wedge vertebrae are stable. I will call the Royal Osteoporosis Society too and thank you.
Denosumab is also known as Prolia…you have to take it every 6 months. I was told for six years…when I would be 89! I was not willing to commit at my age to taking any drug for something that right now I am coping with.my fractures were caused by an accident…if they had been spontaneous…for no apparent reason, I might have considered it.
But I don’t understand why…..if your Dexa scan shows no OP, & you have been discharged by the OP Clinic…why are you being prescribed it? Was any reason given …or was it just intimated it was for the OP the Dexa scan says you don’t have ?
Do get in touch with your rheumatologist again & ask him outright why you are being put on it. …don’t just accept any drug without fully understanding why they want you to take it.
Let’s face it…..we all break bones because we have a fall or an injury..it,’s not just post menopausal women who break bones is it.? Yes spontaneous fractures can indicate OP…but yours seem to have been caused by your car accident…unless I have misunderstood?
I hope you manage to get a believable answer soon.
Thank you for your reply AgedCrone.
When my vertebrae fractured no one I saw asked if I had had a back trauma and I did not connect the two, I was not even asked when I had xrays.
Having now informed both GP and Consultant re the car shunt which happened a matter of weeks before what I think is a delayed onset injury, I am still being asked to take an Osteoporosis drug, which I have said 'No' to until someone can prove without doubt I have it.
No reason was given as to why I should take it; I think due to my age which is 74, I have had RA for 35 years and take 4mg steroids plus other drugs. Is it preventative? But you can still have fractures whilst taking osteoporosis drugs. I do take TheiCal-D3 1000mg.
I will ring the Osteoporosis Society and thank you for your reply.
There are meds for osteoporosis
Thanks for your reply .I am going to try bone balance for my osteoporosis and am taking Litholexal for a calcium supplement.Changed my diet to incorporate more dairy and calcium trying to aim for 1200mg a day. Good luck on your journey.
thank you
That is why it is helpful to speak to the ROS….they only deal with OP…it’s not just an Add On, like it is to RA.
Please, what is ROS and OP??
Royal Osteoporosis Society…..OP!
silly me, thanks
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