Fearing risks of Prolia
I am going to my pcp tomorrow morning to discuss whether to start Prolia or Jubbonti after getting dexa scan results showing my osteoporosis has gotten worse. I took Ralaxifene for the last 2 years and it didn't help. I have researched these 2 drugs and have read a ton of bad side effects from patient reviews and I am really nervous to try! After taking Boniva just one time in the past, I felt like I was ran over by a truck for 3 days and I refused to ever take a biphosphate again. I am thinking about not starting a new drug and exercising more. Any input is much appreciated!
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Yep, I am working with my PT on balance. I can do 1 leg for 8 seconds, trying to get up to 20. Trying to do the one leg balance while I brush my teeth, wash dishes, etc.
Keep me posted on your other things too.
Have a good day and fill me in on what the doctor says after your appt on Tuesday.
I have osteoporosis of the spine and hip. Each person is different but here is my experience: I have received 2 injections of Prolia each year for the past five years with no side effects. My T scores have either improved or stayed the same. I never took the Fosamax type medication, was wary of it.
@karenjoyce Addendum: One injection each 6 months, never feel the injection.
@gravity3 @leslieb52
I would like to second this comment. Would suggest discussing with your doctor whether Tymlos, Forteo, or Evenity might be an option for you
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1 Reaction@karenjoyce
Have you had an anabolic med specifically Tymlos which is reported to produce best results for the spine? I think mainly of gently's posts.
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1 Reaction@gravity3 I was offered Tymlos but the daily injection was not something I was prepared to do, at that time I still worked part time and traveled for work.
@ausiemaggs73: Since getting Prolia injections I have started getting a rash around my mouth. Just wondering if that was your location.
Sorry to hear that. No, mine is inner thighs hips inner upper arms and also back of one calf. Pretty much a large area but not on front of my body. It’s non symptomatic and under the skin. I do hope yours goes away and it’s only temporary.
You say:
"Any input is much appreciated"
I am not sure exactly what your situation is, tscores, fracture history etc., but let me first say that it is very important to see a good endocrinologist to rule out any diseases or conditions which might be driving a diagnosis of osteoporosis.
That being said here is my story. I was diagnosed with osteoporosis of the hip; I tried Boniva; I had side effects with which I did not feel I could live and my dexa results never changed for the better.
Without telling my doctor I stopped the drug. I researched and found a mineral called strontium citrate. I started the strontium citrate and was also on BHRT plus all the usual suspects of good health and exercise needed for bone health.
At my next dexa, my endocrinologist almost skipped into the room. My dexa reading had gone up for the first time in my treatment. I told my doctor that I had stopped the drug and begun strontium citrate. He sat down and on his computer he began to pull up research, some of which I provided, and he also called some other specialists. He told me to continue with the strontium citrate. My results increased with every dexa, until eventually my endocrinologist released me from his care, telling me that I did not need him anymore. The last thing that he said to me was to make sure I took plenty of calcium and to change NOTHING.
Eventually, my dexa showed a normal bone density; the femoral takes a long time to change.
This year my dexa still showed normal bone density and the new TBS program which interprets bone quality showed normal bone quality. All this with no side effects and no fractures.
All of us have to decide what works best for us. But as a friend of mine says who was fracturing and stopped when she began strontium citrate...."We won the bone lottery".
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1 Reaction@leslieb52 Hi Leslie and everyone Appointment with dermatologist yesterday re my rash. Have been diagnosed with something called Granuloma annulare which may or may not be caused by the Prolia injections however, the doc really thought it unlikely as she's never seen it being caused by that but not to say it can't happen. I've had blood tests done this morning so whether or not that shows up with something else will have to wait and see. So as far as the Prolia goes I will see what my gp says next week but I'm hoping not to have to stop it as it's been fine in every other way but I'll be happy just to know there's no underlying condition causing it. I have some special cream that may help which she's prescribed but apparently this condition can just go away by itself in either months or years. It's really not that noticable only if I wear swim costume which I don't really care. Main concern was if it was caused by the prolia and got worse and travelled to my face! (which it hasn't even gone onto the front of my body - only insides of legs and arms and hips. Rash on arms is barely visable. Anyway, I'm going to do another search on this site of this condition and see what it says. In the meantime fellow Prolia users - rest easy and know that MOST people on Prolia have very little problem. Love Maggie from Australia
PS I'll let you all know how if the blood test comes up with anything but hopefully nothing serious!