Since losing my long time primary doctor last year, I am on my second doctor for advice for osteoporosis. I was reluctant to take Prolia recommended by the first D.O. doctor and the second Internist Doctor recommended 50,000 (I think IU) weekly for a couple of months. I haven't picked up the prescription yet as it is not D-3, does not include K2, and recent articles have recommended against high doses of vitamin D. Does anyone know of studies done on this dosage for osteoporosis? I need legitimate reasons for not taking it. But I do need to take something as I have lost over an inch in height, feel aches in my shoulders, and need to rest more than usual.
I also have Peripheral Arterial Disease and occlusion and stenosis on both left and right carotids for which I am taking a statin (Rosuvastatin) and a blood dialator (Cilostazol). This doctor stated that these problems are under the purview of my vascular surgeon and was not interested in hearing about them.
Fortunately, I am no longer taking pred for PMR as of this year. Help!
Written by
pegpowell
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I'm really not sure that even high dose vit D will reverse bone density loss in the short term - adequate levels in the long term are believed to help in preventing the development of osteoporosis. The normal procedure is long term supplementation of calcium and vit D together to aid in building good bone over years. Suddenly adding vit D at high levels hasn't been shown to improve bone density - treatment of over 3 years was required to see that. Short term high doses are used to increase low blood vit D levels at baseline before then continuing calcium and vit D long term.
Osteoporosis as such is not painful - it is the compression fractures that may develop that cause the pain. Shoulder aches and fatigue are not really symptoms of osteoporosis and if you have had PMR in the past then surely that should be your first thought - that it is back?
Loss of height is a sign of osteoporosis - so why are you against Prolia/denosumab? Are you at least on calcium and normal vit D supplements if not bisphosphonates?
Thank you for your prompt reply. One side effect listed for Prolia and Fosamax that is of concern to me is osteonecrosus of the jaw. A few years ago I could not open my mouth too wide without it becoming dislocated. This occurred before and after having a tooth pulled. The dentist said there was nothing he could do, that the bone was disintegrating. For a while I could not yawn without holding my jaw together. It is much better now but occasionally a wrong move and it threatens to get out of joint. Another listed side effect is thigh bone fracture. I hope I am not susceptible to that but I have had one hip replacement which included part of the thigh. My recent dexascan earlier this year indicated osteoporosis and a need for Prolia suggested by the D.O. doctor. It took two visits to the second doctor, an Internist, to communicate my concerns and he rushed through an explanation of the Vitamin D plus calcium that he was prescribing for two months with a follow-up visit. His assistant was easier to talk to and was the one to convey to him my concerns. They both emphasized that the only vitamins that are effective are liquid prescribed, not over the counter ones.
My symptoms are a threat of dislocating my left shoulder in a certain position, as though the muscle attaching it is weak. The muscles that attach to my thumbs are also strained if used too much. It is a matter of use and position and not a PMR symptom. I also have tingling feet when lying in bed, when not walking. I seem to have less energy during the middle of the day. These are subtle changes that are relieved by movement/walking.
I don't take calcium and recently realized that there is no record of a blood test for calcium in my records. My doctor for many years only prescribed Vit.D-3/K2, B complex, C, iron for anemia. I eat a mostly a vegi/fruit diet with added salmon/fish, yogurt, almond butter, sourdough seeded whole wheat bread; low acid instant coffee because of an ulcer, no alcohol because of PAD medications.
I am scheduled for four different blood tests on Monday, after which I am scheduled to pick up the Vitamin D and calcium prescriptions. Any further advice from this added info appreciated.
The risk of osteonecrosis is very small and almost always seen with the high doses used in oncology, not the lower doses used in rheumatology for osteoporosis presention. However - it is there and worries people.
I have no idea what makes the doctor think only prescribed supplements work - what he SHOULD have said is that dietary calcium is better absorbed, any artificial version is the same and less well absorbed,
I would have thought your jaw problem was more likely to be due to osteoarthritis than anything else but I'm not an expert.
If you were in the UK I'd tell you to call the ROS Helpline - is there a charity like it in the USA?
There is a load of info on the website you can read anyway
I am by no means an expert, so you can take this or leave it: I have osteoporosis and have been on Prolia/Denosumab for 3 years. I understand that although osteonecrosis of the jaw is a possibility, it is actually very rare. In your shoes, I would consult with the dentist and maybe the doctor too about the pros and cons for you. After all, bone loss and osteonecrosis are not the same thing. I wish you lots of good luck!
Thank you for your encouraging words. I am beginning to again consider Prolia as preferable to high dose Vitamin D. I just hope I can find the doctor who advised me to take it. She went on vacation and will not be back at the health center in which I am enrolled. Too many good doctors left this place for a Board of Directors' decision which could leave me without a primary doctor.
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