Hi - I have been on pred since Oct 2018 started 15mg and now today tapered to 8.5mg with some pain but manageable. GP called to say I have Osteopenia and prescribed AA which I have so far not taken due to what I have read about the side effects and I have had gastritis and pancreatitis and don't fancy waking that beast!
I am taking Ad-cal D3 and have ordered K2 vitamins and take magnesium. I also have increased my intake of calcium rich foods in my diet and yesterday bought a weighted vest for my dog walks. Is there anything else I should be doing to not get osteoporosis? My GP said if I don't take AA there is nothing else he can advise (he didn't even suggested diet and exercise).
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Bern435413
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Isn't it annoying that so many doctors (in my case, my otherwise very open-minded rheumy) place so much trust in bisphosphonates and are so dismissive about diet and lifestyle changes to improve bone density?
You have nailed it right there darls. Even my fantastic wonderful gp is same. They want to give prolia shots and I am NEVER taking that stuff. No one ever says about lifestyle. I think most patient want a quick pill and don’t want to take responsibility. But they need to. We get one freaking body!!’
I'm with you. I started an 'Exercise for better balance' course this week. The people who had completed the previous term were so enthusiastic about the improvements in their balance that it was very encouraging. One lady told me she'd taken Allendronic Acid for 5 years and wished she hadn't.
My mother who is 97 has lost most of her jaw bones due to Polio therefore suffer from gum pain and difficult in eating with her dentures. Stay away from it.
Yes it is annoying and frustrating. I was shocked at the diagnosis as I was incredibly fit (lifted heavy weights twice a week with a PT, did HIIT training 4 times a week and some crossfit) prior to PMR last year. I also eat a healthy pescatarian diet.
I want to avoid bisphosphonates but worried I might not be doing to enough while I taper the pred.
I have osteoporosis and I avoid bisphosphonates and similar pills prescribed by my GP as they all have side affects including the heart. I take collagen, calcium and D3/K2 daily as well as taking osteo coast class once a week.
Hi - bone friendly diet just started but on Ad-Cal D3 since starting Pred in October 2018. I wasn't taking magnesium or K2 though, have only just started.
I think their excuse is that they are not really taught about diet and exercise at med school just tablet taking! Things are supposed to be changing and they are organising cookery school for doctors somewhere or other!
Out of interest - what are the t-score figures that led to the osteopenia comment? I have osteopenia - t-score -1.3, not in need of intervention. Osteopenia starts at -1.0, osteoporosis at -2.5 - a world of difference.
Hi - I asked him for the scores and was confused by his answer, he said there are no scores you either have osteopenia or you don't. I said how would I know if I was close to having osteoporosis and he said it's the next step if I don't take AA. He did offer me HRT but I suggested that I was probably a bit old for that at nearly 60?
What utter tripe. What with the one who has just said a patient couldn't have problems with PPIs because they took them themself and this one - my opinion of the GP community is falling even further...
I was diagnosed with I was diagnosed with PMR in October 2017 and started on 15 mg prednisone at one point up to 17.5 briefly. Unfortunately my first idiotic rheumatologist did not perform a baseline dexa scan. I had my first 14.5 months into prednisone treatment. I have taken calcium and magnesium most of my adult life and D3 for 10 years prescribed by my endocrinologist. My D3 lab this week was 64 which is excellent.
My dexa scan December 31st 2018 came back as osteopenia. My T scores were -1.7 Hips and 0.0 Spine.
I received about an 11 page report With color photos and much information. Your doctor sounds like an nit wit, sorry. My rheumatologist immediately throughout Fosamax requirement. My numbers give a 10 year major fracture of 11.9 and 1.3 respectively which are well under the normal recommendation for treatment. The reason we are being told treatment is needed even with good numbers are because of the prednisone. I discussed this with my Endo who I've been with for 10 years and with all my health issues medications lack of thyroid previous gastro issues decline Fosamax treatment at this time. She agreed but she said she would rarely do with a patient but knew my situation. My rheumatologist is new this year. She suggests redoing dexa scan in one year now that I have a baseline. I am at 8 mg prednisone. So I am attacking us like you with diet weight during exercise walking and hand weights, calcium 1200 mg split to two doses daily, D3 5000 magnesium and K2. Best of luck to all of us. Janet
Hi Janet, thank you. You sound as though you have good support from your rheumatologist. Good luck with your next scan and hope the changes to diet and exercise show some improvement to your bone density. x
actually I do not have support for my new rheumatologist on any of this, the PMR treatment plan and her insistence that I must go on Fosamax. I defer to my endocrinologist of 10 years. So I guess I'll be looking for my third rheumatologist. Best of luck to you Bern.
I asked for a copy of the dexascan results. It showed that my hip and thigh bones were more dense than a 30 year-old but my spine was porous enough for me to be described as having osteopoenia. I had started taking alendronic acid as prescribed but after a short time the excruciating pains in my knees caused me to stop taking AA,
I stopped taking Pred just over 2 years ago but am still prescribed Calceos tablets. I feel. 99.9% for the ree of PMR. I still have bouts of extreme tiredness but I just sleep longer.
Yes - but osteopenia at what level? -1.3 is osteopenia - but is near enough normal...
If your long bones are denser than a 30-year-old, it is stupid to say you need AA as that will make the long bones even denser and that is also not a good idea if you ever need a hip replacement. In fact, if they are very dense that COULD suggest other problems.
Hi PMRPro - I rang my surgery and was reluctantly given scores over the phone. I asked for T scores and she said all she could give me was 1.8% BMD and probability fracture score of 9.7%. I'm not sure if the 1.8% means -1.8 as a T Score?
No, she's talking rubbish too - must be part of the training at the practice! The FRAX score is the only meaningful thing there and it is only relevant in the context of your age - a 10% chance of fracture in the next year at 45 is very high and would require treatment, at 65 it is in the "green zone" and only requires advice on lifestyle.
Lord only knows what she means by BMD 1.8% - none of the sources I can find says anything.
In my case it seemed that the receptionist could not access the full info and just had the percentages listed out too. I managed to get the nurse to do it for me when I was getting a blood test.
I cannot believe that drivel, does the Dexascan come out with a printout just saying ‘this patient has osteopenia’? Of course it doesn’t, who is he kidding? It has numbers to do the calculation. Can you ask for the printout of the scan, you are entitled to it.
Yes, as Piglette says, ask for a printout. You are entitled to it. Be strong and stand your ground. In the previous post to Ronnie 101, Ruadh recommended the book ‘Your Bomes’ by Lara Pizzorno. She said she followed the protocol and reversed her osteoporosis. Take care 🙂
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Dexa Scan results
DEXA Scan Results
Alendronic acid & DEXA scan
Dexa scan results
