Hello I'm asking for help, we are losing hope. My sister, who is 54 years old since november 2017 has broken 11 vertebrae it was not caused by fall or some injury. To this day, doctors do not now how to diagnose the illness or find the cause. The calcium is losing and is not saving to the bones. The bone marrow, onkomarkers, histology are negative. She has highly positive ANA, osteoporosis and not defined focus of femur bone. She has positive scleroderma and systemic sclerosis. She is suffering from terrible pains and she is using only vitamin D- calcium and analgetics. I hope someone will help. Thank you.
Broken bones, vertebrae, loss of calcium - Bone Health and O...
Broken bones, vertebrae, loss of calcium
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nataly2237
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Hello Nataly. So sorry to hear what an awful time your sister is having, and how worrying for you all that the doctors haven't come up with a diagnosis. I don't fully understand the medical terms you've used, but am surprised she hasn't been offered bisphosphonates or other similar medication to attempt to strengthen her bones. The nurses at the National Osteoporosis Society should be able to advise you - (freephone) 0808 800 0035.
Thank you so much we will look into it
Hi nataly, I am also very sorry to read about your sister. You must be so worried about her. If you are in the UK then do call the NOS Helplines and speak with a nurse, as Met has suggested. The nurses are there to take calls between 09:00 and 17:00, Monday to Friday, with the exception of Bank Holidays and Christmas closure. Occasionally, the Helpline is closed for training.
There is also an American forum, National Osteoporosis Foundation, where you can post. Some of us from the UK also use this forum. This is the link: inspire.com/groups/national...
Thank you, I will try writing there too.
Hello Nataly, does your sister also use vitamin K2 and Magnesium? They are also essential , together with Calcium and vitamin D, for strong bones. Countries with the highest milk intake=Calcium (like in the Netherlands, where I live) have the highest occurrence of osteoporosis.
Yes, she is using.
Eating 5-6 prunes per day is meant to be good or taking the supplement boron.
Has your sister had her Vitamin D levels checked?
Yes, it was alright.
Often the doctors say the Vitamin D level is "normal". It is best to get a copy of the test results - it is your entitlement. At least here in the UK, it is. Vitamin D testing should also be checked out twice a year as it can be a higher result in the spring/summer than in autumn/winter. We do not store Vitamin D. I note that your sister is taking calcium/Vit D but still important to know exactly what the level is.
Dear nataly I personally would pay for ( funds allowing) a full assessment by an endocrinologist or rheumatologist ( professors in my case) and as soon as possible as it sounds like you sisters situation is worsening daily
All the best
I agree with the other members comments. Like Met00, I don’t know whether her other conditions would contribute to her broken bones or make any DEXA scan results harder to interpret.
Does your sister live in the U.K. and has she actually been diagnosed with OP using a DEXA scan? If so I’m amazed she hasn’t been given OP treatment.
Do you know what her Vit D level was? I found that a daily dose of 5000 IU of D3 was the only way I eventually reached an optimal D level. My D level now runs at 150 to 170 nmol/L and I get it checked twice a year.
Does she eat a balanced diet contain quality protein.? This is essential for bone strength and flexibility, as the bone framework ie matrix, is composed of the protein collagen. To keep this healthy, it needs ongoing maintenance, by the body, requiring quality protein.
I was a vegetarian for 40 plus yrs until I started breaking bones. I gradually added free range chicken, eggs, tinned Alaskan Wild Red Salmon which is rich in Ca if you include the bones, quality protein and Vit D3 / Omega 3 if you include the liquid. I now occasionally eat U.K. reared lamb.
I also eat a daily, 150g portion of full fat Goat Yogurt, which contains 360mg of Ca. The U.K. brand I buy is St. Helens Farm, which is sold in supermarkets like Sainsbury’s. Cows milk yogurt is good as well, provided you get a plain one which has used a live culture and doesn’t have all the added rubbish like sugar and artificial flavours. I also drink some full fat goat or cows milk. Fat is essential for the absorption of the fat soluble vitamins ie. D3, A retinol and K2. I have replaced the soft margarines I used to eat, with butter and coconut oil, because the veg oil margarines contain more transfats to make them solid.
As others have suggested, have a word with the NOS nurses for advice. Assuming your sister lives in the U.K., she needs to get an urgent NHS referral to see a consultant dealing with OP. The one I saw was a rheumatologist who was knowledgeable about OP.
Best wishes to both of you.
Thank you very much for all the advice, she has balanced diet. She does not live in UK that's the problem. We decided to try writing at different forums around the world in hope someone would know or maybe has a similar case.
I had a feeling your sister did not live in the UK.
Even if you cannot put all our advice into practice, I think you should still speak to the NOS nurses.
Your sister is lucky to have your love and support. Good luck to you both for the future.
Thank you
If you do not wish to pay for the phone call to the NOS helpline as you are outside of the UK you can email them.
You can contact our specialist nurses in one of THREE ways:
Call 0808 800 0035 - free from all UK landlines, mobiles and call boxes
Email nurses@nos.org.uk for a reply within 5 working days
Write to the nurses for a reply within 7 working days: Helpline, National Osteoporosis Society, Camerton, Bath, BA2 0PJ
I already did, yesterday, thank you and we will look into it (level of vitamin D)
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