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4 days ago · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

Hi sunnyflower, I take 800 mg of calcium instead of 1200 mg of calcium because of how my digestive system seemed to react…bloating, aching, constipation and such….

4 days ago · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

Hi Cantcando, I go to Mayo for endocrinology (osteoporosis issues). I went to Mayo once, many years ago and saw a neurologist for my migraines and had a very poor experience. I sought out their patient services, at the time, who sent my concerns directly back to the particular neurologist, who basically wrote me stating he gave me excellent services. I never went back or followed up any further. Now that I am older, perhaps wiser, but a better self-advocate, I would have continued up the chain of command. I have seen so many neurologists in my local community and our “parent” clinic three hours away, I’ve lost track. We lose specialists routinely because of our very cold and isolated location, my guess. I have seen all my specialists in person (except one during the height of the covid outbreak), even though it’s a long drive (but manageable-about 6 hours). I have been there this summer and they take the utmost precautions and you always feel safe while you are there. Thanks for sharing your experiences too and be well!

5 days ago · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

Right now, I go in every six months prior to the injection because my calcium tends to run a bit low and it needs to be in a certain range to receive the injection…..it always manages to be okay though….my endocrinologist attempted to increase my dosage but I couldn’t manage it, so I continue with 800mg of calcium in supplement form and a daily serving of yogurt. Also, I take 2000 mg of vitamin d daily (I live in northern Minnesota so do not get much access to natural absorption of the sun. Take care and stay safe!

5 days ago · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

I have to say, looking back, my migraines felt like much more of a nightmare than anything else I have had to deal with….all the medications were changed as needed….the craziness I have gone through finding a migraine medication plan, was extremely challenging with numerous nutritional, lifestyle and medication changes over many years….presently, they are stable and with my other health issues, my migraines seem to impact me more than anything else…..but eventually I found something that worked for me and you will too for the osteoporosis…..😊😊😊

Thu, Sep 17 8:23pm · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

I also tried Tymlos twice but it was unsuccessful due to muscle pain. This was given to me during my stress fractures that were taking a long time to heal. I haven’t tried Evenity, so this is helpful for me to know about for the future. Who knows? Perhaps there will be something even better?😊

Thu, Sep 17 8:19pm · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

My scans have reached the point now that if I have no fractures, I do not have to return for two years!

Thu, Sep 17 8:18pm · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

I have multiple health issues (migraines, osteoporosis, fibromyalgia, osteoarthritis, bronchiectasis) but I have been dealing with osteoporosis since I was in my late 40’s. I really can’t remember all the Bisphosphonates I took (and stopped due to migraines), but I do remember having success with IV Boniva, but unfortunately it did not help my osteoporosis. I was then put on Forteo, but quickly stopped this medication due to daily migraines. My rheumatologist switched to Prolia at that point and this was successful for me. I stayed on this medication for three years (maybe longer, I don’t exactly remember) and then talked myself into a year medication holiday. All progress was gone and since by then, I was old enough to take Reclast so my rheumatologist wanted me to try this. I agreed and had very bad side effects that were immediate (flu-like, muscle pain) which lasted about 10 days. I absolutely refused to take this medication again. At this point, I was referred to an endocrinologist at Mayo Clinic and I am now back on Prolia for now (I. Am 65 yrs. now). The future is unknown once I hit the limit of years I can take Prolia. I don’t know if this is helpful, but take care!

Wed, Sep 16 9:27pm · Bisphosphonates or Not? Both No Win in Bones, Joints & Muscles

In reply to @sunflower My decision to pursue medication was based on seeing my aunt as an older person, who was unable to stand up straight and had to live on oxygen as a result of the position her body contorted in from osteoporosis. There were no drugs available when she was old and it remained steadfast in my memory of this wonderful woman, who was a professional ballroom dancer (with her husband) but could no longer enjoy any life outside of their small assisted care setting. She lived a long time this way. She was a small, petite woman (and so am I)….thus, this was my journey….will it be the right one? Who knows….but it will have to be for me….there will not be looking back but only forward to what life has to offer me as I move along in my life…..I’ve had to wrestle with these decisions a long time and I have had a few stress fractures, but otherwise things have been going along…many Bisphosphonates I was unable to tolerate due to migraines, but I think I’ve been on all of them with mixed results. Right now Prolia is what I am using with good results, but that may not be the decision that you reach. Good luck; have faith in your decision; and if a doctor doesn’t feel comfortable working with your decision; I would look for a different one.