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. 🙂

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

@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??

Jump to this post

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?

REPLY

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.

REPLY
@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.

Jump to this post

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!

REPLY
@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!

Jump to this post

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

REPLY
@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. <br />
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. <br />
Wish you luck in our decision. <br />
<br />

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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 .

REPLY
@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 .

Jump to this post

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

REPLY
Please sign in or register to post a reply.