Treating Osteoporosis

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. 🙂

@flalynne

…i HAVE TAKEN THE PROLIA INJECTIONS 11 TIMES WITH NO SIDE EFFECTS AND GOOD RESULTS…HAS ANYONE TAKEN THIS FOR A LONGER PERIOD? …IF SO WHAT HAS YOUR DOCTOR SUGGESTED LONG TERM? TO CONTINUE USING PROLIA OR OTHER FORM OF TX??

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You are one of the few I have seen who has done so well on Prolia. My doctors are encouraging me to use it, but I am scared to death due to so many people who have experienced terrible side effects. Do you have any advice for me?

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Let me throw in my two cents worth on Prolia. I was diagnosed with breast cancer 2-1/2 years ago. After surgery and radiation I was put on Arimidex to hopefully prevent a recurrence of my hormone receptive positive breast cancer. Because this drug depletes calcium in the body, and the fact that I was already showing signs of osteoporosis, I was also put on Prolia. I have had five shots. I recently discontinued taking the Arimidex because of the side effects and therefore my oncologist decided I no longer need any more Prolia shots. It’s hard for me to say which side effects came from the Arimidex and which came from the Prolia, but I definitely experienced a wide range of side effects. I’m all for doing whatever it takes to stay alive and healthy but, my experience with these two drugs detracted far too much from my current quality of life. I realize I’m not going to live forever and I want the best possible day every day that I am alive. For the record, my side effects included weight gain, joint pain, joint weakness, an occasional weird rash, digestive issues (don’t ask), insomnia, hair thinning, mood swings, leg cramps, swelling in feet and hands (had to get my rings sized and buy a size larger shoe), hot Flashes/Cold Sweats. . . (Maybe a few others that escape me now). I think you can see why I chose to discontinue use. My surgeon and my oncologist have been very supportive of this decision.

Liked by EES1, tikigod18

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@leannz

Let me throw in my two cents worth on Prolia. I was diagnosed with breast cancer 2-1/2 years ago. After surgery and radiation I was put on Arimidex to hopefully prevent a recurrence of my hormone receptive positive breast cancer. Because this drug depletes calcium in the body, and the fact that I was already showing signs of osteoporosis, I was also put on Prolia. I have had five shots. I recently discontinued taking the Arimidex because of the side effects and therefore my oncologist decided I no longer need any more Prolia shots. It’s hard for me to say which side effects came from the Arimidex and which came from the Prolia, but I definitely experienced a wide range of side effects. I’m all for doing whatever it takes to stay alive and healthy but, my experience with these two drugs detracted far too much from my current quality of life. I realize I’m not going to live forever and I want the best possible day every day that I am alive. For the record, my side effects included weight gain, joint pain, joint weakness, an occasional weird rash, digestive issues (don’t ask), insomnia, hair thinning, mood swings, leg cramps, swelling in feet and hands (had to get my rings sized and buy a size larger shoe), hot Flashes/Cold Sweats. . . (Maybe a few others that escape me now). I think you can see why I chose to discontinue use. My surgeon and my oncologist have been very supportive of this decision.

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Thank you so much for your input. I have now experienced a slight compression fracture in the spine, but am still hesitant to take Prolia. My gut is telling me not to do it. Your experience just confirms that. There has to be another way!

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@harborside24

Thank you so much for your input. I have now experienced a slight compression fracture in the spine, but am still hesitant to take Prolia. My gut is telling me not to do it. Your experience just confirms that. There has to be another way!

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Harborside if you haven't read my post do its under lioness

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@adamsky

Hello. I just took my first injection of Prolia this Monday. I haven’t had any side effect yet. I haven’t had any previous meds for my Osteoporosis either. My Doctor wanted to start me out with Prolia.
I had a full blood panel done before I had the injection making sure my blood calcium levels were good and I was not anemic as I am prone to that. I also got all my dental work done before the injection also.
Wish you luck in our decision.

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I have taken both Forteo & Prolia. I have necrosis of the jaw probably from years of Fosomax, Boniva etc. Had my 1 st Prolia injection 6 mos ago & may discontinue d/t significant constipation. Had some back pain in the first month or so. Both of these symptoms are a puzzle to my MD as she has never heard of anyone having these although the Prolia website says these are the two most common reasons people discontinue. All this is very discouraging.

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@harper2018

I have taken both Forteo & Prolia. I have necrosis of the jaw probably from years of Fosomax, Boniva etc. Had my 1 st Prolia injection 6 mos ago & may discontinue d/t significant constipation. Had some back pain in the first month or so. Both of these symptoms are a puzzle to my MD as she has never heard of anyone having these although the Prolia website says these are the two most common reasons people discontinue. All this is very discouraging.

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DAMN you poor thing. Are you sure you can stop Prolia? Can I suggest a book written by Dr. Lani Simpson: Dr. Lani's No-Nonsense Bone Health Guide : The Truth about Density Testing, Osteoporosis Drugs and Building Bone Quality at Any Age. She knows more about this topic than anyone I have yet to find.

Liked by tikigod18, Amoreena

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@elaine66

I have been on prolia injections for 2 yrs with little improvement. My last injection caused a reaction of severe hip pain an severe cramping in my calves. So I think I will discontinue. Don't know what else to do? Any suggestions?

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Hi Elaine, sorry I don't have any suggestion other than to share my experience with Prolia injections. I managed to handle 7 injections. I began suffering most of the horrible side effects before doing research on Prolia. I was not told about the side effects and trusted my doctor. My last shot was in 2015, and I am still suffering from unbearable pain, vertigo, skins problems . I just had an injection of cortisone in my back hoping this will help me. I have contacted Amgen, the drug company and the FDA to no avail, my suggestion to you is no more Prolia. It is a form of chemotherapy , the active drug is Denosumab, also marketed as Xgeva for cancer patients. This drug has been a nightmare for me and as I said, I wish I had never taken. It should be taken off the market. I hope this help you. Best of health.

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@rufus

Hi Elaine, sorry I don't have any suggestion other than to share my experience with Prolia injections. I managed to handle 7 injections. I began suffering most of the horrible side effects before doing research on Prolia. I was not told about the side effects and trusted my doctor. My last shot was in 2015, and I am still suffering from unbearable pain, vertigo, skins problems . I just had an injection of cortisone in my back hoping this will help me. I have contacted Amgen, the drug company and the FDA to no avail, my suggestion to you is no more Prolia. It is a form of chemotherapy , the active drug is Denosumab, also marketed as Xgeva for cancer patients. This drug has been a nightmare for me and as I said, I wish I had never taken. It should be taken off the market. I hope this help you. Best of health.

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@rufus. @leannz. @harper2018 Thanks for sharing your experiences with all of us. I've an appointment with the rheumatologist next week about my osteoporosis. I'm no nearer an answer than I was several year s ago, except I now have only one kidney with disease. Seems to me we are long overdue to have a speciality called "Osteoporosis." If I learn anything I will share.

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@trishanna

@rufus. @leannz. @harper2018 Thanks for sharing your experiences with all of us. I've an appointment with the rheumatologist next week about my osteoporosis. I'm no nearer an answer than I was several year s ago, except I now have only one kidney with disease. Seems to me we are long overdue to have a speciality called "Osteoporosis." If I learn anything I will share.

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@elaineh and all others who have had these shots I have Ostepenia precursor to osteoporosis but as a retired nurse and friend who almost died from these shots I will never have them Suggestions to everyone from my Dr is to weight train this strengthens the bones ,Vit D3 have Dr check this in lab work ,calcium all these build bones .I don't trust drug companies they just want to get rich at our expense You are your own advocate for your body .I pray for help for everyone that has this
disease.Blessings to all .

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@lioness

@elaineh and all others who have had these shots I have Ostepenia precursor to osteoporosis but as a retired nurse and friend who almost died from these shots I will never have them Suggestions to everyone from my Dr is to weight train this strengthens the bones ,Vit D3 have Dr check this in lab work ,calcium all these build bones .I don't trust drug companies they just want to get rich at our expense You are your own advocate for your body .I pray for help for everyone that has this
disease.Blessings to all .

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Nice one lioness……have a happy Christmas……BERYL

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@beryl

Nice one lioness……have a happy Christmas……BERYL

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@beryl thank you beryl you have a Merry Christmas also

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@lioness

@elaineh and all others who have had these shots I have Ostepenia precursor to osteoporosis but as a retired nurse and friend who almost died from these shots I will never have them Suggestions to everyone from my Dr is to weight train this strengthens the bones ,Vit D3 have Dr check this in lab work ,calcium all these build bones .I don't trust drug companies they just want to get rich at our expense You are your own advocate for your body .I pray for help for everyone that has this
disease.Blessings to all .

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Agree! It can be stressful and hard to stand up for yourself when doctors push hard for patients to take these meds, but as you said, we must be our own advocate for our bodies.

Liked by lioness

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@tikigod18

DAMN you poor thing. Are you sure you can stop Prolia? Can I suggest a book written by Dr. Lani Simpson: Dr. Lani's No-Nonsense Bone Health Guide : The Truth about Density Testing, Osteoporosis Drugs and Building Bone Quality at Any Age. She knows more about this topic than anyone I have yet to find.

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Am just now reading this book and learning SO much….wish I would have had the knowledge prior to going on prolia 7 years ago!!!

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@angelas

I, too, am interested in treatments for osteoporosis at a younger (50) age; however, postmenopausal. I found Dr. Lani’s Bone Health Guide book helpful. I’m wary of beginning medical treatments (Forteo for 18-24 months and then a bisphosphonate for 5-7 years) based on one BMD scan.

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that's what I am taking Forteo for 18 to 24 Mo. then to Prolia. I am 60.

Liked by jmanj

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I've recently been diagnosed with Osteopenia and Osteoporosis runs in my family. My mother, age 82, takes a prolia shot 2 times per year. I am 61 and my insurance won't pay for that so my doc recommended Boniva. I took my first dose yesterday and got along pretty well, mild heartburn most of the day, but this morning woke up with back pain and chest pain. I'm breathing fine so I'm not concerned about that but am uncomfortable and wonder if anyone else has experienced this. How long does this last? I've contacted my doc so I'm waiting to hear back from them.

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