Hello all - I have learnt so much reading the daily posts, knowledgeable responses and exchange of experiences - if only the medical professionals were as expert?
I was diagnosed with PMR December '22 and have reduced to 10mg Pred (from 20mg) this month. I am mid a lifestyle changing move to the Isle of Mull which involves a serious renovation project - obviously NOT what you should be doing at my age (76) with PMR. But having started....... The stress both physical & mental has slowed my weaning despite best efforts to pace myself etc. I was not aware I did stress pre Pred but find my resilience now is pretty low.
My GP was pressing for taking Alendronic Acid - fairly routinely re Pred. I resisted since I have Barrett's Oesophagus and managed to get a DEXA scan privately via a private rheumatologist.
My readings were :
AP spine (L1-L4) BMD 0.785 , T-score -2.4 Z-score 0.1
Femoral Neck (L) 0.495 -3.2 -1.1
Total Hip (L) 0.503 -3.6 -1.8
My Rheumatologist response
"your bone densitometry results from the 8th of June show osteopenia in the spine and osteoporosis in the hip. I think it would be helpful to add in Vitamin D 2000IU daily to your treatment and also Denosumab 60mg sub-cut six monthly. Your GP will be able to do this treatment for you. I have chosen this rather than a bisphosphonate, given your gastroesophageal reflux."
A Pharmacist at my GP surgery is offering to comply providing various blood tests are OK and when I have completed some current dental work.
My GP doesn't offer regular bloods so I have no idea where my inflammatory markers are at present or indeed vitamin D, B12, levels are. I have had blood in urine for 25 years due to a minor ?? undiagnosable kidney problem treated with Lisinopril.
I have been taking 4000iu Vitamin D and K2 since diagnosis - or nearly - as soon as I learnt that is necessary on this forum - thank you! Since I have been on 30mg of Lanzoprazole - also for 25 years due to Barrett's oesophagus - I imagine this will have caused non absorption of calcium and my current osteoporotic state ??
My question to all you very experienced and knowledgeable people is: before I take another drug with damaging side effects - where on a scale of 1-10 are my DEXA results ??
Should I be able to manage on D3 and a high calcium diet??
Thank you for your time and thoughts 🙏
Written by
mullochs
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1. A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.
2. A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. ...
3. A T-score of -2.5 or below is a diagnosis of osteoporosis. ...
4. The lower a person's T-score, the lower the bone density.
If your Z score is below -2, your bone density is lower than it should be for someone of your age.
Although BMD results provide a good indication of bone strength, the results of a bone density scan will not necessarily predict whether you'll get a fracture.
For example, someone with low bone density may never break a bone, whereas someone with average bone density may have several fractures.
This is because other factors, such as age, sex or whether you have previously had a fall, also determine if you're likely to sustain a fracture.
Your doctor will consider all of your individual risk factors before deciding if treatment is necessary.
Can I suggest you contact ROS -they have very good helpline to talk things through -they are the experts -
I have been on their website this afternoon - thank you for the pointer - not come down either way as yet 🤨 but will contact their helpline for specific PMR/Osteoporosis/Pred info.
The spine reading is borderline osteoporosis - but the hip reading is frank osteoporosis and that is the place that all the fuss is about. A fractured neck of femur is the devastating injury that is often life-changing for the elderly if they fall. It may even be life-threatening over time after the fall. And if you are doing renovations - you are rather exposed to risk. Even I would accept denosumab in that case.
I love the “even I” comment - will obviously have to take the risk more seriously?
I need to be as mobile as possible in order to reap the benefits of the long winded renovations on the beautiful Isle of Mull - my happy place! So no risks to be taken !! Thank you - I will get the bloods done and see where we go from there.
I would check out saveourbones.com/It's here I learned about the history of Alendronic Acid . I receive lots of emails from the website about latest research etc. You can find everything about nutritional needs there, even if you don't follow the alkaline diet theory closely. I was advised to take AA by my GP but declined after I read about it. I had a REMS scan last June and the consultant told me there is evidence to say 90% of DEXA scans are inaccurate and that he felt mine had been so. He told me I didn't need to take AA and to 'not let myself get frail' I'm now doing strength training age 68. It sounds very much like you are keeping strong by doing your renovations on gorgeous Isle of Mull with the Sea Eagles!! I think it's great you are still 'going for it'!! If you read how AA 'works' you will be shocked. The arrogance of the medical profession thinking they can change how the body works without serious consequences....
Barn doors! Totally amazing. Enjoy your happy place and keep going! For years I've wanted to live on a Scottish Island but I feel we have left it too late! So, your story gives me hope!
If you get a chance Dr Rangan Chatterjee's podcasts are amazing. This one is on the importance of strength training and the science behind it.
I have pretty much the same bones as you do and will not take AA or anything else. trying to keep up with strength training and D3 and K2-7 I have never broken a bone and think that they are finding that more and more bones are not properly evaluated by DEXA scans. Perhaps some are more flexible than others. !! Your renovation sounds great! good strength training right there. I walk a lot. and do Yoga and always keep in mind when they say, OMG you have a 12% chance of breaking a bone in the next 5 years .. that what they are really saying is Cool, you have an 88% chance of NOT breaking a bone in the next 5 years.
Brilliant - thank you !! That is my gut feeling - but obviously wary of jeopardising my post renovations future ? It is so interesting/critical that DEXA scans may not be accurate??
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