Scared to start pharmacological therapy for severe osteoporosis
I'm new to the group and just found out I have severe osteoporosis, (T score is -4.5). I'm young, only 57yrs and the Dr. is recommending I start on Forteo or Evenity. I know I have to do something since my bones are so awful, but the side effects of all these drugs are so scary. Some folks are telling me not to go on pharmaceuticals but seek out nutraceuticals and lifestyle changes. Anyone else in this same place or have had good outcomes with either of these drugs? Thank you in advance!
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I would recommend a multi-pronged approach. Perhaps the first step might be to investigate if there is a known cause or risk factor in terms of your genetics or life style such as diet and exercise that caused such severe osteoporosis in a person of only 57. If yes, you could start by changing whatever is possible.
As far as drugs, you would need to research the adverse effects of each drug of interest and determine with the help of your doctor which would give you the best chance of improving your bone density with least risk of serious side effects.
Certainly life style changes known to improve osteoporosis would be important as well, whether you take the medications or not.
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1 ReactionSo-called bone building drugs build brittle bone that is prone to breakage. The best approach is supplementing with a combination of calcium, magnesium, vitamin K and vitamin D as well as engaging in weight-bearing exercise. Also, determine if any of the medications you are on could be causing bone loss. Several medication classes can cause bone loss, most notably glucocorticoids (like prednisone) and hormonal therapies (like aromatase inhibitors for breast cancer or androgen deprivation for prostate cancer). Other culprits include SSRIs, proton pump inhibitors (PPIs), certain antiepileptics, some diabetes drugs (TZDs), and injectable progestins (Depo-Provera), affecting bone density by interfering with calcium/vitamin D, hormone levels, or bone cell activity. Be very careful about stopping SSRIs or antiepileptics abruptly as that could be dangerous.
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1 ReactionHow were you diagnosed? Was it a routine screening or were there symptoms?
@tillymack Thank you!!
@cperlin Thank you! I was on a SSRI for a while, but I'm no longer taking it. I'm not taking any of the other drugs you mentioned. I just had extensive blood work done and my PTH is low, but vit D, calcium, mag, and thyroid were all normal. So, not sure what's driving the train! I am post menopausal and not been on HRT, but don't think that is the main reason for such rapid bone loss. I really think it might be tied to my gut which is a mess, but none of the Dr.'s can figure out what is going on.
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1 Reaction@celia16 Thank you! In late October I went to the ER for severe back pain which I never have back pain. They did a CT and told me I had a fracture at T8/9 and ‘old’ fractures at L2/3 and L4/5 which I didn’t know were there. They referred me to a pain specialist who ordered a MRI and DEXA. The DEXA came back at -4.5! I was shocked. My last bone density in 2016 was good. The pain specialist recommended a kyphoplasty, but I sought a 2nd opinion with a spine specialist who told me not to have the kyphoplasty as it would cause more fractures above and below T8/9. He referred me to PT which I’ve started and a ‘bone health specialist’ which I don’t see until January 20th. I also saw my rheumatologist who ordered extensive blood work which all came back normal (vit d, calcium, mag, etc.) except for PTH which was low. She recommended I start Forteo. I also just saw my Gyn about HRT, who is recommending Envenity. It’s frustrating when you receive differing opinions about your treatment options. I’ve had become very educated in a short time on severe osteoporosis.I know I need to find one good practitioner and stick with them for my care. I’m not sure if this ‘bone health specialist’ will be any good and what her recommendation might be. I’ve wondered if I should have another DEXA (I know insurance won’t pay) because I’ve heard there is wide variability in machines and operators when a DEXA is performed. I also need to find out my fracture risk as I understand that is what is most important and that you can have a bad T score, but not necessarily be at high risk for fracture, although with my T score, I know I’m at high risk for fractures.
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4 Reactions@cperlin, hi. the bone building drugs that build more brittle bones are Prolia and Evenity. The bisphosphonates don't build bone except by collecting it; these bones are also more brittle. All these drugs carry a risk of osteonecrosis.
The bone building drugs that remodel bone, Tymlos and Forteo, build bone that does not carry the risk of osteonecrosis and if often given as a treatment for brittle bone caused by the other medications.
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4 ReactionsIt is frustrating and scary. I received the diagnosis before a major back surgery - which complicated everything. For me, turning off the noise and deciding I would trust my doctors. They informed me of the risks but the risk of not taking the medication was not worth it for me. I’m on Forteo for at least the next two years. With that decision I don’t run down any rabbit trails (or try not to😏). I have places I want to go and things I want to do and this path offered me to best assurance. Going the natural route - which is likely what got me here - cannot measure as accurately as the path I chose. Wishing you the best! K
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3 Reactions@br03 Have you tried seeing a functional medicine doctor? They specialize in things like nutritional medicine and gut health.
@karenoharmon Are you having any side effects being on Forteo? I think it' so scary either way-drugs or natural route--it's a reality check for sure! Good luck to you.
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