Greetings to all of you wise PMRGC members. Thank you for your responses to my other posts. At 65, I was diagnosed with PMR a month and a half ago and was on 10 mg prednisone for a month weaning down 1 mg each month. So far so good - no pain. I had a DEXA Scan last week which showed osteopenia (hips and lumbar). Even though it is not osteoporosis yet, my Rheumatologist said that I qualify to take fosamax since I am on long term prednisone. From what i have read it seems like a rather nasty medicine and I would prefer not to unless i have no choice. Wondering if any of you chose not to go on fosamax and try to ward off more bone loss with lifestyle changes? I use to be an irish dancer, but haven't been doing much of that as of late. I walk long distances, practiceyoga and just ordered a weighted vest. I do take calcium and Vitamin D/K3. I have not been eating much dairy because was trying to follow anti-inflammation diet, but guess i need to start eating more dairy again. All so confusing.
Thank you
Written by
SandyBoots
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"Osteopenia" - yes, but what level of osteopenia? What are your t-scores? Are they closer to -1.0 or -2.5? -1.0 is normal and -2.5 is osteoporosis. When I was first handed alendronic acid (Fosamax) my figures were all better than -1.3 so I refused it at the time and continued to refuse it for the next 7 years - I religiously took calcium and vit D supplements 2x daily and walked for 1/2 hour almost every day. My dexascan remained almost the same. Loss of bone density on pred is not inevitable.
However, due to a range of circumstances and me taking my eye off the ball maybe in a sense of false security, there has been a considerable change in my bone density in my hip in the last 4 years - strangely, almost none in my spine. Last spring/summer I stopped the 2x daily calcium and upped my dairy intake because I had been having bladder problems - and it made such a difference. But at the same time I was also walking less, part circumstances and part recurrent physical problems. and then my husband was ill and in hospital for most of January which made my injury problem worse again. By the time I could walk a bit more Covid had arrived and we weren't allowed more than a few hundred yards from home (I live in Italy).
Excuses, excuses - they aren't really good excuses, it was a set of circumstances that could have been circumvented combined with lack of motivation and fatigue. Now I will be discussing what I am offered by the local osteoporosis expert. I have always said - when they are justified they should be considered. Had I taken them 11+ years ago I would still be on them - not advised for that long. BUT - I should have been more careful. Loss of bone density is not inevitable - but you have to work at it.
Thank you for your reply. It is always so helpful to hear others experiences as we make decisions about our medical care. My L1-L4 T score is -1.9 and hip T score (which i am more concerned about) is -2.1. Strong family history of osteoporosis. My Rheumatologist has ordered calcium, Vitamin D, sodium, creatinine and parathryroid blood work and a 24 hour urinalysis for something?
For the time being i think i will continue with the Vitamin D and calcium, weight bearing exercise and start eating more dairy again. I do eat other calcium rich foods (Salmon, kale, etc.)
I will be honest - had my t-scores ever been that sort of level even I would have considered medication much sooner than now. And yes - it is my hip result that bothers me too. Interested to see your rheumy has parathyroid in his little list - I'm impressed!
I can only tell you my own experience with Fosamax. It was prescribed right at the beginning of my long PMR/GCA journey and I had only taken a few doses when I experienced a strong oesophagal reaction - feeling as though I were being strangled and could not breathe.
I currently take a seaweed based calcium and like you I take Vit K2 and D3. Other foods than dairy do contain calcium - broccoli ,kale and soya beans for example.
Thank you Maria for your reply. I think i recall my Mother having oesophagal concerns when she took fosamax. I really appreciate you sharing your experience.
Hi SandyBoots, yes, I was afraid of Fosamax. I've had PMR for 4 years now and it seems to be finally burning out. I was prescribed biophosonates at the beginning for my PMR journey but after some research, I never used the prescription. There are some negative results from taking biophosonates and the one that scared me the most was a condition called osteonecrosis or jawbone death. It occurs when bone in the jaw fails to heal after a minor trauma resulting in pain, swelling, infection, and exposed bone. The studies show that only 4% get osteonecrosis but how do I know that I won't be one of the 4%? My first Dexa scan showed some osteopenia and after a year on Pred the second scan didn't show any more deterioration. With these results I decided to go the natural route, calcium, vitamin D, etc. because I believe the osteopenia was not caused by Pred but just a natural result of menopause. I've never taken meds in my life so being on Pred was enough for me. In the long run, taking or not taking biophosonates is a decision you will have to make for yourself after educating yourself on the pros and cons of the medication. The thread you need to follow is by HeronNS. She was able to reverse some of the bone loss with natural remedies. Good luck and may your PMR burn out fast!
thanks to all who replied and helped me think through the decision as to whether to take fosamax. In addition to weight bearing and supplementation, I am also going to try Dr. Fishman's yoga postures (sciatica.org). I found a yoga teacher in my area that is trained and certified in his technique. He has been doing research as to whether 12 unique poses can help build bone or at least slow down the reduction process. Worth a try!
At 63, I was also diagnosed just like you starting on 10 mg prednisone and weaning 1 mg down every month. I have increased my Vitamin D3 intake and I take Vitamin K2 in addition to eating liver on a regular basis. I stop taking calcium recently for fear of atherosclerosis. The Vitamin K2 is the key to make sure that all the calcium goes to bones and teeth and not to other organs/joints/muscles/heart. On my next appointment with my doctor, I will be asking for a CAC score test.
Then you DO need to check your dietary calcium level is adequate. I made that mistake - not because I was concerned about atherosclerosis but because of bladder problems - I now face needing some other form of bone density medication becaue while I thought I was eating a reasonable amount of calcium, I obviously wasn't.
calcium is at the upper range of normal...I had x-rays done on my neck, wrist, hips and shoulders.. x-rays showed calcification of the joints between neck bones and on uterine fibroid tissues
My parents had strokes within a month of each other plus I am diabetic. My rheumatologist ordered the x-rays. My internist recommended a CAC during a telehealth/lockdown.
So the saga continues.... Fortunately I have an astute Rheumatologist that checked my parathyroid (Pth,intact) which is elevated. I am in the process of doing a 24 hr. urine collection looking at calcium, etc. to check on hyperparathyroidism. My Vitamin D is good.
I do know that you can have normocalcemic hyperparathyroidism and have calcium in the normal range. She did the Pth to try to understand why my DEXA scan progressed so quickly into the osteopenia range from my previous one 2 years ago. I have always been very active - lots of jumping in Irish dance which is good for the bones, but not so good for the joints right now.
Chiming in again to remind all that magnesium is needed to take up calcium from the blood and form new bone. It is also essential to the heart. Research has shown that 85% of adults in the US are deficient in magnesium.
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