Hi -
This winter I was diagnosed with MGUS at age 56. I've taken Synthyroid for low thryoid for years and, at age 40, was diagnosed with osteopenia in hips and lower back. My endo said unfortunately Synthyroid can cause bone loss, so take 1500-2000 mg of calcium per day, magnesium, vitamin D (1000), vitamin K, eat 2-3 dairy foods / day, avoid carbonated soft drinks, and exercise.
At age 50, I was diagnosed with osteoporosis and my endo said now it is time for start Boniva (ibandronate). Did that. A couple of years later while yawning, my lower jaw froze and I started having jaw pain while eating. Went to an oral surgeon and he said 'are you taking bisphosphonates, cause if you are, stop since you now have TMJ along with tooth loss.' (Didn't know implants were so expensive!)
Well, went to hemo-oncologist and she recommended 'bone rebuilding drugs,' but encouraged me to discuss non bisphosphonates with endo. Hemo-oncologist said if MGUS progresses it would be to my advantage to have stronger bones.
I visit my endo next month and am wondering what are the 'non-bisphosphonates bone building drugs' best for MGUS? When I stopped taking Boniva following TMJ diagnosis, my endo didn't recommend another drug.
Thanks, Diane
Forums
Re: Drugs for bone loss
Dear Dianem,
A couple of thoughts:
Pete V.
A couple of thoughts:
- While bisphosphonates can cause a dreaded complication known as ONJ (osteonecrosis of the jaw), especially with long-term use, I am not aware of an association between bisphosphonates and TMJ. I would think that TMJ would not preclude the use of these drugs to treat your osteoporosis. I would query your dentist as to what they meant and see what your endocrinologist thinks about this.
- There are other drugs for the treatment of osteoporosis. Xgeva (denosumab) is one, but its mechanism of action is similar to the bisphosphonates, in that it inhibits the function of osteoclasts, cells that break down bone. Teriparatide (Forteo) is a parathyroid hormone fragment that has been used to treat osteoporosis is some instances, but your endocrinologist might have reservations about using this in someone with MGUS.
- Patients with MGUS are at higher risk of osteoporosis, but osteoporosis can be a sign of bone damage by multiple myeloma – you do not have to have discrete bone lesions in order to have bone damage from myeloma. As such, if your M spike level has been on the rise and your bone mineral density on the decline, it might be worth reassessing the status of your MGUS and make sure that it hasn't morphed into symptomatic myeloma.
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Drugs for bone loss
Thank you, Dr. Voorhees, for the information.
In July I had the 6 month blood test and no changes in the M-spike since December 2011. Yes, I did question my endocrinologist if she would switch me to another osteoporosis drug, and she declined following the oral surgeon report 3 years ago. He was very anti-bisphosphonates. The jaw symptoms and 'tooth root loss' did stop once I discontinued Boniva, but I know I need to take something for the bones.
I have noticed the majority of women in my family (approaching 50-mid-80s) take bone loss drugs. And many of these women have dentures, implants, and experience bone breaks / compressions (hips, femurs, tibula, ht loss, etc.), so I gather I'm not in a good gene pool for strong bones past 45.
Diane
In July I had the 6 month blood test and no changes in the M-spike since December 2011. Yes, I did question my endocrinologist if she would switch me to another osteoporosis drug, and she declined following the oral surgeon report 3 years ago. He was very anti-bisphosphonates. The jaw symptoms and 'tooth root loss' did stop once I discontinued Boniva, but I know I need to take something for the bones.
I have noticed the majority of women in my family (approaching 50-mid-80s) take bone loss drugs. And many of these women have dentures, implants, and experience bone breaks / compressions (hips, femurs, tibula, ht loss, etc.), so I gather I'm not in a good gene pool for strong bones past 45.
Diane
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dianem
Re: Drugs for bone loss
Hi -
I meant to ask, are there drugs people with MGUS should not take? Dr. Voorhees mentioned a drug (teriparatide) used to treat osteoporsis may raise some reservations due to MGUS. Just questioning if there are additional drugs that can have a negative influence with MGUS (progression) or mask a spike.
Also wonder if those diagnosed with MGUS should get flu shots. When diagnosed (Ig MGUS chromosome 7) in January following a bone marrow aspiration, the oncologist-hemo said she wouldn't recommend any changes or supplements. I don't have PCP and should probably locate one.
Thanks, Diane
I meant to ask, are there drugs people with MGUS should not take? Dr. Voorhees mentioned a drug (teriparatide) used to treat osteoporsis may raise some reservations due to MGUS. Just questioning if there are additional drugs that can have a negative influence with MGUS (progression) or mask a spike.
Also wonder if those diagnosed with MGUS should get flu shots. When diagnosed (Ig MGUS chromosome 7) in January following a bone marrow aspiration, the oncologist-hemo said she wouldn't recommend any changes or supplements. I don't have PCP and should probably locate one.
Thanks, Diane
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dianem
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