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Treating Osteoporosis: What works for you?
Osteoporosis & Bone Health | Last Active: Sep 2 10:11am | Replies (1085)Comment receiving replies
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!
Replies to "Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with..."
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.
Hi, Thank you for your message. I am starting with once weekly OsteoStrong, which means once week osteogenic work, an appointment with an integrative MD at Northwestern Medicine in Chicago, and continuing to try to find information about how to treat osteoporosis without the biosphosphonates. I just ended one year of Tymlos, and there have to be other solutions than just jumping on Reclast or an oral bisphonsphates. I would not take Prolia. My mom developed osteonecrosis after five years on Fosamax (early 2000s) and had spinal fracture while she took the Fosamax - so I have not wanted to take the bisphosphonates. I know stress reduction, diet (I also eat a lot of spinach and 5 prunes daily) and weightbearing exercise help. Do you know about AlgaeCal or Dr. Susan Brown of Save Our Bones? https://saveourbones.com/ I wish you well, and will update if I find any promising treatments.
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@julie2020, @gailb, @sue225 and everyone else who has unanswered questions about osteoporosis medications.
1. There are three medications that work by building bone. Only three.
Forteo
Tymlos
Evenity
The length of time to be on one is determined by the condition of your bones at the entry point.
For example, I have only 5 more months of Tymlos. At that point, based upon where I started, all the work to be done by this medication will have been done. I can't stay on Tymlos after that point.
If you are on or considering being on either of the three, you may want to know when the road ends for you so that you can make a more informed decision for your initial bone-building medication. It appears that the bone-building benefit will last approximately two years after discontinuance and conservative medical support. At that time you will be faced with the next decision: What bone preservative will meet your needs for the rest of your lifetime?
Other conditions to watch while building bone are your levels of calcium and Vitamin D. The dosage amount has a lot to do with where you are now and what the demands will be for the direction you chose to take.
You will probably be comfortable about being able to handle any osteoporosis side effects with a medication dosage that lasts a short period of time. Daily would be preferred, but weekly is better than monthly, etc. etc. Make sure you can stop any time you choose without having to wait months for it to be out of your body.
2. There are post-bone-building continuation options at this time and the group is called bisphosphonates including:
Fosamax
Boniva
Actonel
Reclast.
This will be an important decision. The bone-building results last about 2 years and then you will need support from a preservative medication to protect the bone you have built.
For those of us who are highly sensitive to medications and find the side effects of bisphosphonates like Boniva impossible to handle, we will have to hope that there will be a post medication developed that does not have so many side effects. There may be one under development right now. I will continue to search. Anyone else have information to share?
Please leave me your questions, concerns, and share your decisions so we can all learn from each other. I am discovering that this situation has challenging complexity.
May you all be safe, free, and protected.
Chris