Prolia treatment for osteoporosis: What is your experience?

@tikigod18 Hello: Thank you for sharing this terrifying experience. I am glad that your friend's wife is getting better now day by day and glad for her that she only ever had the one injection. I have been on Prolia for two + years and due a 5th shot in March. Because of constant neck pain and pain in both shoulders as well as increased pain in my back area where I have a scoliosis I have decided not to go forward with Prolia. I did not know until recently that it had become a drug that was now being recommended to stay on forever. I was offered it when it first came out and was told at that time you could only stay on it for two years. It is only recently that I have seen more and more coming out that there can be a severe rebound effect if you stop using it. I am especially interested in what someone's experience is after being on it for two years or more and then stopping. Best wishes to you and to your friends, Ann.

I was on prolia for 6 years....bone density improved so my Dr. allowed me a drug holiday for 1 year....at the end of that year fracture in lower back, disk problems, joints aching and bone density bit the dust. My immune system also altered. Now specialist suggesting only approach is to continue prolia and start forteo. I am in a quandary as to what to do next. Have found a functional medicine doc and have appt. to see him in couple of weeks. Definitely wish I had never started prolia.

Ok my dear! I totally understand...because I am
Suffering as well from Prolia. I am risking a lot but here goes!
I worked internationally for 35 years became very familiar with Chinese Medicine. And had approval from a well known medical center Chinese doctor to do the herbs SPECIFIC FOR ME.
So, when Western doctors told me there was no antidote for Prolia!!! I returned to a Chinese doctor in Seattle WA who prescribed Chinese herbs SPECIFICALLY for me...after looking at my face,tongue, blood pressure, listened to my heart, pulse.
He prescribed and gave me chinese herbs that I cook every day and then drink the one cup of tea.
It has taken away most of my severe pain. My hair has stopped falling out. My vision is restored. I am sleeping at night. My muscles are stronger. The constipation is gone. stomach cramps gone. Food taste good again. Face twitch stopped. Rapid heart beat stopped.
I was also told Prolia can and may be toxic to older women(?). The tea helps cleans the liver, lungs, blood as well as other Organs in the body.
NOTE: I am not a doctor. I am not advocating Chinese Tea or Medicine. It is the only help I have found. I can move without pain.
No one knows how long the half life of Prolia is?

I have been prescribed tea from this doctor before for another ailment and for me it worked. Again, now for a new issue with me and Prolia after pain, it is working. I had no where else to turn to for relief. CHO kept coming up in my search about Prolia which turned out to be Chinese Hamster Ovaries? That is why I turned to Chinese medicine tea. It’s not something you can mail order!!! Be careful.

Best

I am scheduled for my 4th Prolia injection on December 26 and am in the throes of making the decision to go forward. At my insistence, my specialist did testing (a urine test) to determine whether or not Prolia is working. He called me yesterday with the results which show that I am not losing bone and, in his opinion, it is working. He readily agreed with me that there simply are no good options for treatment. He mentioned a drug in use in Europe that has not been approved by the FDA for use here. Starting at some point in the 90's, I was on Fosamax for years. At the time, doctors were apparently prescribing it as a preventative measure, and I have read that use of this drug has contributed to negative alterations to our bones. My sister was hospitalized for two weeks in serious condition as a result of her esophagus being entirely ulcerated. Her doctors said it was caused by Fosamax, and that was the point where I stopped it myself. The negatives from Fosamax weren't determined until there was data available from years of use. I fear the same will come to be true with Prolia. While I have experienced some side effects such as fatigue, acid reflux, chronic cough, joint pain, vertigo, and hair thinning, at age 75 there is no way to prove that all are due to Prolia. As a part of making a decision to go forward, I've seen my internist for other causes of the fatigue (he could find none), an ENT to rule out other reasons for the cough and vertigo (he also found none). and another specialist for ongoing pain in knee joints (xrays showed no reason). I am also working with a physical therapist to develop an exercise routine that I can safely do for overall strengthening. I have fairly severe osteoarthritis in my hands which has proven to be problematic when doing things like lifting weights, so I wanted guidance from a professional who would take that into consideration. Because of the experience you and others have experienced with rebound fractures, I am feeling trapped with no option but to continue. It's difficult to subject myself because at month six since my last injection, I am actually feeling good.

@marib: Interestingly enough I watched a Prolia commercial this weekend and examined what it said. The side effects took longer to list than anything positive, but what I looked at was what many of us should think about; what REALLY is our risk of a fall leading to a broken bone? If you don't climb stairs or hold a banister when you do, if you don't have small children or dogs with toys to trip over, if you don't live around or walk on ice, if you hold on to a shopping cart in a grocery store to avoid wet floors and slippery conditions, if you do exercise as much as possible.....then what really IS your risk of fracture, compared to risking the side effects of these drugs? I don't know the answer, but I find that MOST pharmaceuticals have known and hidden side effects, and natural treatments often work as well if not better.

Two months before I turned 50 I tripped and fell and broke my left wrist. Becuse I had read an article in NPR, I inisisted on a Bone Density Scan. I live in Switzerland and my doctor here was not in agreement but I insisted. I was diagnosed with Osteoporosis and took Bonviva injections for two years. It got worse and I switched to Prolia. I just had my DEXA scan last week after two years on Prolia and there is improvement in my bone density... still Osteoporosis though. I am 54 now and in trying to get to the root cause have discovered Normocalcemic Hyperparathyroidism. In September I had to have my thyroid removed and one parathyroid. Now my parathyroid hormone is through the roof again am scheduled for a scan at the beginning of January hoping to find the troublesome parathyroid and have it removed. Hyperparathyroidism contributes to Osteoporosis. This was a long winded reply to say... so far, Prolia has worked for me and I have no side effects that I know of. At my age and the level of my Osteoporosis, I am trusting my specialist. It does worry me though that I can never go off of this sort of medication.

Absolutely agree with you on all accounts! Great points in weighing the benefits of taking these drugs or not taking them. Vitally important to consider that the side effects can be long-time or "life-long" even if you stop taking them!

I recently found out that I have Osteopenia, -2.2, and my doctor had recommended Prolia. My insurance would not pay for it so she then prescribed Boniva, orally. I took one dose and the next day had the worst back pain I have ever had. I will not take it again and after reading about Prolia I don't want to take it either. I am 61 and outside of living in Nebraska where we have ice quite often, I am going to take my chances and try eating more calcium rich foods and doing some weight excercises. I used to think that if a med could fix things I should go for it but I have experienced side effects more often lately and I am done with them!.

I am 75 and have had three Prolia shots, which I regret. Like Fosamax, which I took for years, I just don't feel that enough is known about long-term results, and have postponed my 4th which was scheduled next week. My specialist readily admitted to me that there simply are no good pharmaceutical options available right now. If you haven't already, I suggest joining the Facebook support groups for osteoporosis - there are several. In addition to exercising and diet, I would suggest looking into supplements and how they are best absorbed by your bones. I have added K2 and boron to the calcium citrate, magnesium and D I was already taking. Additionally, I switched from magnesium oxide to magesium citrate. I just wish at your age I had been more diligent about all of the above. I am not into social media at all, but my son helped me join in such a way that my exposure is limited, but I still have access to things like the support groups..

@ladonnae I also have had Osteopenia for at least 8 yrs but I started weight lifting every day ,yes eating more calcium but along with calcium you need Vitamin D3 have your lab work done before I was put on D3 mine was very low.Buy it from a good company not drugstore kind also Magnesium all 3complement each other Im a retired nurse and like you know what side effects there are from meds be your own advocate you know your body wish more people like you would do this Blessings to you