Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. đŸ™‚

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Many times I have come here or to other medical chats and I have encouraged people to pay attention to their bodies and communicate with their doctors - instead of just doing what the doctor tells you to do and accepting unwelcome consequences. This has been met with a lot of criticism. I came across a doctor who said basically all the same things I am saying. Here is just a small snippet of what they said, "We operate from a deeply held conviction that in the long run each person is his or her own best physician. Practitioners may have greater medical knowledge and technical expertise, but there is no one who knows more about what is best for this patient, on the deepest level, than the patient. He or she has traveled roads on the life journey that we have not. The health challenges he or she faces are a part of that journey, and practitioners are privileged to be able to grow and learn from the people they work with." This can be found in a subchapter called "Be An Actualized Patient" in a book called "Thyroid Power: 10 Steps to Total Health" by Richard L. Shames M.D. and marilee Halo Shames, R.N., Ph.D. This book talks about many health care concerns - not just thyroid. I highly recommend this book to anybody who is seeking better health and a way to communicate with doctors. As I always say, doctors have enormous case loads and there are SO MANY medications and diseases and conditions for them to keep track of. Even the best doctor may only know a little about each problem. And they cannot be inside your body - so they have no idea how you are feeling when you take a medication. If you just want to read this one section, it is on pages 101-104. These doctors encourage the patient to speak up and communicate with their doctor - don't just listen and comply.

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@nancyguy

Thank you, Nancy 1228, for your reply. Certainly seems like the stress caring for your parents and loss of weight, etc. caused the drop. I am going to research holistic treatment more extensively. I wish you the best of luck. Saying a prayer that you will find the best option for your health.

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Thank you. I wish you the best of luck and prayers as well. I keep reading these forums and follow a couple FB groups recommended by @parrotqueen. The shared knowledge and experiences of all of us is valuable as we research our best health options.

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I came across this article this morning and it is interesting. Please, be aware of your sources when you are investigating treatments.

Dr. Karpf’s Response to Bone Drugs Article
https://americanbonehealth.org/medications-bone-health/dr-karpfs-response-to-bone-drugs-article/
JK

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@contentandwell

I came across this article this morning and it is interesting. Please, be aware of your sources when you are investigating treatments.

Dr. Karpf’s Response to Bone Drugs Article
https://americanbonehealth.org/medications-bone-health/dr-karpfs-response-to-bone-drugs-article/
JK

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Thank you for this; I wasn't aware of this organization. The exercises they show are helpful.

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@artscaping

Hi, GailBL, thanks for the suggestion. I was on Medicare Advantage for 10 years. When their profits dropped in Southern California because too many seniors lived there, they made MA totally unavailable. I now live and register in MN. So I am on my second year of MN with a CA add on just in case I stub my toe while there.

I will ask my agent in plenty of time.
May you be free and content.
Chris

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Some follow up @gailb. I checked on my Supplement. It is the "F" package that will only be available after January 2021 (or was it 2020) with the Medicare Supplement programs, not the Advantage programs because of other services provided by independent insurance companies. Thanks again for you help.
Chris

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@artscaping

Hi JK, The cost of Tymlos is like a rollercoaster depending on when and how much my medicare supplement is paying. Last year it ended up being approximately $131/per month with the nominal amount of $90 in October, November, and December. So far this year it has been around $300/mo. I have a by mail supplement and because of the COVID-19 purchased 3 months at a time. It was on backorder through my local pharmacy. So the manager found me folks to chat with at the manufacturer and a specialty pharmacy. My Endocrinologist and staff started calling their other patients and providers to see if anyone had a "tide me over" supply. What a wonderful world this can be.

I wish I could be more helpful......I just don't do $$$$rollercoasters well.
Chris

I was pretty darn overwhelmed with that kind of assistance.
May you feel safe and protected.

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@gailBL, @jk, @lillypaws, @nancy1228,
I may have some good news for those of you who are on Tymlos or possibly Forteo. I may be in something greater than the glory hole. Have any of you worked with or heard of Optum Specialty Pharmacy. This pharmacy only fills prescriptions for specialty medications like Tymlos because of the refrigeration requirements until opened, and the distribution system which is by subcutaneous self-injections. Please let me know if you want, need, or just would like to have contact information.

The reason that I am passing this along is that I am on my second refill and I place a 90-day order to avoid backorder problems with COVID-19. I have been treated like a valued customer and have had no problems with the shipment. j

And now....here is the other news. Last 90 days, my 30-day refills were $300. That is much better than the $1000 every 30-day refill last year with the local pharmacy. This week, each 30 day supply was about $35 with Optum. The order also includes the needles and touchpads at no additional charge.

Do you know what that might mean for Forteo and/or Tymlos patients? Please share your "secrets" with me or ask questions for me to hopefully answer.

May you all be free of suffering and the causes of suffering.
Chris

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@julie2020

Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with severe low blood calcium. So, I'm reluctant to start that drug. Also, my Endo did say what you have commented, that with Prolia there is no stopping it. Doctor favored Reclast over Prolia because she indicated Reclast stays in the body longer once you stop infusions, thereby being able to take off a year or two. I am very active, exercise, eat super healthy, take additional vitamins, and am otherwise healthy. It's just my bones that are in such poor shape! I'm very frustrated by the fact that women with osteoporosis just don't have better options!

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I am new to this website. I had Osteopenia many years. I have taken calcium supplements over thirty years but still regressed to Osteoporosis. I have had three injections and am due for the next in November. After the second injection I noticed that my jaw did not feel the same so I asked my dentist to take an x-ray. He reported it was ok. About a month after the third shot which was administered late because of Covid-19, on June 5th, my gums became extremely sore and pain developed in my jawbone. I just had an x-ray last week and I need to have two teeth extracted. The pain in my jawbone still exists and I have called my doctor and left a message stating I do not want any more Prolia injections. I have had no reply from her. I have not yet had the teeth extractions. I am extremely upset and don't know where to turn for help.

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@annloh570

I am new to this website. I had Osteopenia many years. I have taken calcium supplements over thirty years but still regressed to Osteoporosis. I have had three injections and am due for the next in November. After the second injection I noticed that my jaw did not feel the same so I asked my dentist to take an x-ray. He reported it was ok. About a month after the third shot which was administered late because of Covid-19, on June 5th, my gums became extremely sore and pain developed in my jawbone. I just had an x-ray last week and I need to have two teeth extracted. The pain in my jawbone still exists and I have called my doctor and left a message stating I do not want any more Prolia injections. I have had no reply from her. I have not yet had the teeth extractions. I am extremely upset and don't know where to turn for help.

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Hello @julie2020, Welcome to Connect. I can understand why you are upset and I also would be upset. I have osteopenia and degenerative arthritis and I am supposed to be taking 1200 mg daily in calcium. I took it for a month or so but it really binds me up so I stopped it and try to eat healthier and lose some weight at the same time. Here's some information to support the symptoms you are having with jaw pain and more.

Study Quantifies Dental, Jaw Risks With Denosumab — 10-year data suggest oral issues common:
https://www.medpagetoday.com/endocrinology/osteoporosis/78033

You may also be interested in the following article -- 11 ways to increase bone density naturally
-- https://www.medicalnewstoday.com/articles/325903

When your doctor calls back, can you ask her if there are any alternatives that are safer?

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@annloh570

I am new to this website. I had Osteopenia many years. I have taken calcium supplements over thirty years but still regressed to Osteoporosis. I have had three injections and am due for the next in November. After the second injection I noticed that my jaw did not feel the same so I asked my dentist to take an x-ray. He reported it was ok. About a month after the third shot which was administered late because of Covid-19, on June 5th, my gums became extremely sore and pain developed in my jawbone. I just had an x-ray last week and I need to have two teeth extracted. The pain in my jawbone still exists and I have called my doctor and left a message stating I do not want any more Prolia injections. I have had no reply from her. I have not yet had the teeth extractions. I am extremely upset and don't know where to turn for help.

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@annloh570 I would like to add my welcome to this great website where we all care and help with what we can. As John pointed out these two websites have a lot of good information on them . I have osteoporosis and won't take any of the meds the Dr's prescribe as my girlfriend was on Fosamax and had the jaw problem then a injection with side effects. As a nurse I have seen to many people with side effects . I prescribe to the natural way . My Dr has me on the calcium citrate 1200mg split in two . This is the better way to take your calcium. My rheumatologist wants me to go on these meds like Fosaman but I told her I won't when I talk with her Aug 3rd via teleconference I will explain to her . You can do it the natural way and you won't have side effects . There are pros and cons with people some can and others can't like me . All I can tell you is be proactive you know your own body better then the Dr. does . Hope to hear from you again .
t

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@annloh570

I am new to this website. I had Osteopenia many years. I have taken calcium supplements over thirty years but still regressed to Osteoporosis. I have had three injections and am due for the next in November. After the second injection I noticed that my jaw did not feel the same so I asked my dentist to take an x-ray. He reported it was ok. About a month after the third shot which was administered late because of Covid-19, on June 5th, my gums became extremely sore and pain developed in my jawbone. I just had an x-ray last week and I need to have two teeth extracted. The pain in my jawbone still exists and I have called my doctor and left a message stating I do not want any more Prolia injections. I have had no reply from her. I have not yet had the teeth extractions. I am extremely upset and don't know where to turn for help.

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I have a similar situation. Due for my third injection next week and developed gum swelling and pain two weeks ago. Need an extraction. I also had to have an extraction while on forteo two years ago. I was told there was no connection to the meds. It must either be the meds or the osteo because I have never had these type of tooth problems before! Please keep me posted on your experience and I will do the same. I am also waiting to hear from my dr.

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