Anybody have any SUCCESS stories after using Prolia. I'm 58 years old, I have moderate osteoporosis in my lumbar spine. All the other areas seem OK. I'm very afraid to start this medication. I have never tried any other bone-building drugs. Fosamax was suggested, but I was afraid of it, so I went to Mayo Clinic Endocrinology. He suggested the Prolia. Any help would be greatly appreciated.
I'm scared!!!!
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Why would you take prolia with moderate osteoporosis? That is too severe for moderate osteoporosis. You can’t come off it safely for one reason. Maybe try a natural route for a start. Vitamin K2 aims the calcium onto the bones. Check your vitamin d levels. Also magnesium?
Have foods that support your bones including bony broth, leafy greens, avocados, vegetables and fruit. In other words, a very healthy diet.
Prolia is worse than fosamax. I take none as there is so much research now about them. They are even suggesting we cannot trust the tscores. One size does not fit all. A small boned woman probably never reached the 30 year old optimum Bon growth.
If you have not broken any bones then do nothing drastic like any of the drugs. This is my opinion but many agree and some research does as well.
Have a good look into it before you do anything apart from a healthy diet and exercise and some vitamins if needed. But the K2 is good regardless because it aims the calcium into your bones.
Just confirming. My lowest score was -3.7 in lumbar spine. Everything else was better than that. The doctor referred to it as moderate. His words, not mine. I'm not really sure how these numbers actually classify you. I'm already doing vitamin D, but never did any calcium supplements. Currently adding 1000 mg calcium per day by drinking milk. Also I have always done yoga and low impact aerobics, now and adding weights to this routine. What do you think about boniva as an as alternative? Thanks so much for your input!
Boniva is still a biphosphonate so no better than any of the other drugs. Vitamin K2 along with your calcium would be a good start. I notice you are not having a supplement for the calcium. You can check levels in your blood tests which you GP should be doing anyway. Just make sure he/she is though!
You need to research until you are satisfied with any decision you make. Taking any of the drugs must not be taken lightly as they are not good drugs.
If I may, I suggest that getting 1000 mg calcium through plain milk alone is not the best idea. Mix it up a bit with other types of dairy, specifically certain kinds of cheese (Brie is one, but any kind of aged cheese should be good), yoghurt and kefir. All these have been shown to help with bone density. I'm not sure what the issue is with plain milk, but it is probably something to do with the fact that the helpful forms of dairy have all undergone some form of fermentation so the calcium may be more available to the body. All fermented foods are considered healthful. Calcium is also available in many leafy greens, although as you know some will be better sources than others. Internet will help you find the best ones. The leafy greens will also supply you with magnesium which along with Vitamin K2 is very important for absorbing the calcium into the bones.
Thank you! Yes I have always been doing spinach, cheese, yogurt, salmon etc. But now I have ADDED the 1000 mg of milk. I do not like taking supplements as they have their own side effects. I plan to add the vitamin K2 to the mix now as well. Thanks!
Prolia isn't usually the first line of treatment, and you need to either stay on it for life or know what other treatment you'll go onto when you stop, as without changing to something else, stopping prolia brings a high risk of rebound fractures.
"Prolia is indicated for the treatment of postmenopausal women with osteoporosis at high risk for fracture, defined as a history of osteoporotic fracture, or multiple risk factors for fracture; or patients who have failed or are intolerant to other available osteoporosis therapy. "
Taken from AMGEN guidelines for prolia: google.com/url?sa=t&rct=j&q... (links to a PDF)
I made mistake of rushing in having a prolia injection. It caused problems so after 1 I was able to stop! Meanwhile I have friends who are happy taking prolia. My advice is don’t rush and give yourself time to do research!
Thanks for that advice. What kind of problems did you experience?
Can’t blame prolia for every symptom but what I felt that hadn’t experienced prior to needle was arms aching plus nerve sensation hands, increased thoracic spine pain, coccyx pain, hip and knee pain, fatigue and heavy sensation legs, heartburn and oesophageal problem, hair falling out, tongue and mouth sensitivity and mouth ulcers, sleep problems, and increased neuropathy foot!! It’s now 9 mths post needle and the only problem I still have is arm pain at night and loss of sensation in some fingers at night. I now know that is pressure on nerve in cervical spine and has nothing to do with prolia! Also knee pain is osteoarthritis! Body starting to feel normal again.
My T score was -2.6 fem hip and -1.7 spine so feel I shouldn’t have been rushed into the prolia!
I've been having pressure put on me to take Prolia (by GPs) in spite of the Rheematology consultant saying I was 'too young' (based on mother's life span I may have 34 years ahead of me). My scores are the same as yours.
Not sure why the GP’s are so loving prescribing prolia! My first GP was happy to go with exercise and calcium. My vit D ok then. I improved my dexa scores too. But have now just scored in osteoporotic range!
I had a mother diagnosed in her 80’s after a fracture. She had fosamax but got so sick she stopped and just took calcium and vit D. Had no further fractures and lived till 97.
Guess we need to weigh up health status, fitness and balance when determining falls risks.
Please don't let these doctors talk you into do ANY of these awful bone meds! They can ruin your life...you'll get much needed, very good info. on this site...research the bone meds..the side effects are life-altering...and sickening....do HRT (Hormone Replacement Therapy) instead. I'm 71 and am on it..it will help build your bones.
The problem with Prolia it is a 6 month shot and if you have a problem there's no way out. You just suffer the side effects.
That's what I thought. What experiences do you have with bone-strengthening drugs?
The suggestion to not to rush and give yourself time to do research, is very sensible.
I was on Prolia for 5 years, I did always had done lots of excercises to help strengthen my bones, the Prolia medication moved me from the osteoporosis range to the pre osteoporosis range. For me it worked well, unfortunatly I came off the medication at a time when consultants didn't fully understand the risks of stopping Prolia with out the support of another medication and I end up with a very badly damaged spine.
I'm on Forsteo at present, daily injections, a two year course, I've already asked what will happen in a years time when I stop, it was suggested I go back on the Prolia. I'm not sure how I feel about that, but at the end of the day there are very few medicines which promote bone growth. I might ask for a second opinion.
It's so hard to know what to do for the best, good luck in your research.
Best Wishes
Posy White
Thank you!!!! That was very helpful. I am already scheduled for my 2nd opinion, and will not hesitate to get a third if need be. Glad to know that it worked, but sad to hear how the story has ended for you. I sincerely hope that you get some better results again as you go forward.
Spendthrift - good plan of yours to get a third opinion if need be, to give yourself time to consider what people have said here, to research for yourself, and when you have enough information to make you comfortable (ie not "scared!!!"), make your decision and a plan to follow it as best you can. I had decided not to take Prolia or any other, but I still feared "is this the right choice?". Then I found this site, and I was able to let go of doubting myself and set about doing what I can do lifestyle-wise to help myself. There is vast support from experienced members for that option here if you discover it is the one for you. Most important, don't make a decision in fear, only in sight of the facts known to you. Best wishes1
Look up evenity
Evenity actually has a warning of possible death.
nwhn.org/the-nwhns-statemen...
I don’t think Prolia does promote bone growth??? Surely it simply interferes with the body’s natural process and stops the breaking down of old bone. So you get a build up of old, brittle bone which may break easily, especially once the meds are stopped.
Do make sure you have dentist check your teeth before starting medication!
Please check that you don't have hyperparathyroidism before you take any drugs, because it may mean that they would make no difference to your bones and you're risking them for no good reason.
Hope that helps.
Fran 😉
already checked that box. Thanks!
Here's a new twist to this story. I had read that if/when you go off Prolia you have to 'taper' it off with another drug or you can get rebound fractures (sometimes spontaneously without any actual incidents). I asked my Doc, and he confirmed that. You have to go on another bone-building drug immediately after Prolia to prevent that from happening. He suggested Reclast at that point. Anybody have an opinion on THAT?????!
That's why many of us are recommending that Prolia be used only as a last resort and only in cases where the patient is prepared to stay on it indefinitely. It should never be suggested as first line treatment and probably use in younger people avoided altogether.
I have to agree in hindsite Prolia should be a last resort and is not the wonder drug perhaps orginally thought. I 've asked two different Consultants about Reclast rather than going back on Prolia both basically said the same .... Intravenous zoledronic acid (Reclast) is given for the prevention of osteoporosis, 5mg once every 2 years. Also Prolia is stronger than Reclast and Prolia may actually help you make more bone. (This is where I think I got bone growth bit, which, I think Annalu may have explained it better).
On a personal note the other no, no for me re zoledronic acid is one the 'Common Side Effects of Reclast' is Loss of appetite or weight loss. I really struggle with appetite since the spinal damage and keeping weight on is a great worry.
Posy White
I have a similar story to Posy White. I had 6 Prolia injections and as a result my bone density improved (short term) so that T scores at the end of treatment were -1.3 lumbar spine (osteopoenic not osteoporotic) and -0.9 in the hip which is the lower end of normal. At that stage, the drug had "cured" me of osteoporosis. So the hospital put me on a "drug holiday" which is not recommended now by the manufacturers. But within 11 months of the last injection I suffered the first of eight spontaneous vertebral fractures. A year after the last bone density scan, the T score in my lumbar spine had dropped to -3.7.
I now know that after stopping Prolia, there is a risk (very high in my case) of spontaneous vertebral fractures. The spinal surgeon who carried out vertebroplasty/kyphoplasty repair procedures stated that he had never witnessed such "aggressive osteoporosis". I eventually had zoledronate infusion last November and in May began daily Forteo injections.
As a Prolia @victom,” I recommend no Prolia
It’s a life long commitment - you’re too young and your condition does not warrant its side effects or dependency.
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Prolia and Parathyroidectomy
Stopping Prolia
PROLIA, ATYPICAL FRACTURE OF THE FEMUR. SYMPTOMS & TREATMENTS
prolia
