In November 2016 after a Bone density scan I was diagnosed as Osteopenic. My doctor prescribed alendronate daily. After my BD scan in Nov 2017 my bone density had increased and was told to continue with what I was doing...good diet, Calcium and Vit D, Pilates 2x weekly and alendronate.
My next BD scan was in December 2018 but I couldn't get the results until March 2019. My hip had decreased bone density but the bone density in my spine was slightly increased. My family doctor prescribed Prolia and I had one injection (in March).
Since then I have been feeling more tired and the pain in my back (I have had chronic low back pain for decades) has increased. Also I have severe leg cramps, am more tired overall and have occasional pains in my face.
Today I visited my dentist for a filling and asked him about the ridge that had appeared recently on my upper gum. He asked if I was on Prolia and when I said I was he said the ridge was due to bone growth under the gum and advised me not to use Prolia for more than 1 - 1 1/2 years. I asked him about the leg cramps and he said they could also be caused by Prolia. Several of his patients suffer from pains in the face/jaw and head...
I am due for a second injection of Prolia in September but have decided not to have it.
What should I do?
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Exbury1905
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Let me get this straight. You never have been diagnosed with osteoporosis, only osteopenia, aka low bone mass? Yet you have been taking bone medications for several years?
I'm not a medic, only going by what I've read and from the comments made by fellow patients on this forum. Do not get that second Prolia shot.
Do you happen to know your t-score? If you do and can share that will help us on this forum give you better advice.
Meantime you could read my account of what I (also osteopenia and other risk factors) have been doing:
Thank you for your reply. Correct. I have never been diagnosed with osteoporosis, only osteopenia. I started Alendronate in Dec 2016 and stopped that in March 2019, just before I had the Prolia injection. I will NOT get the second Prolia shot!
My T-score:
Lumbar Spine: (2016) 0.4; (2017) 0.4; (2018) 0.6.
Hip: (2016) -2.2; (2017) -1.7; (2018) -2.0.
I have read your account and will take some time to digest it!
I looked this up, should have bookmarked the reference, but what I read was that it's safe to discontinue Prolia after one shot. If you have as few as two shots you have to go on another bone medication in order to avoid the risk of rebound osteoporosis. I believe your doctor was negligent in prescribing Prolia to you. It's a medication which should be reserved for those people with severe osteoporosis who have no alternative and are prepared to stay on the medication for the rest of their lives. As it also affects the immune system this is not a decision to be taken lightly. I'm so glad you've decided to pull back and do more research before agreeing to any other osteoporosis drugs.
Thank you. That more or less agrees with what my husband, who is a pharmacologist, found out. I shall have to have a chat with my doctor!!! Any other comments/suggestions are welcome.
I don't think I said that I would possibly go back on alendronate...I know there are also problems associated with it but I had no noticeable side effect during the 2+ years that I took it - the reduction in bone density was due to other reasons (I was less active and had not been taking Vit D...)
I just found this fairly recent article about Vitamin K1 and K2. The conclusions include the observation that therapy with Vitamin D and Vitamin K2 can result in improvement to the bones matching that provided by bisphosphonates, with no side effects. Which is what those promoting natural methods have been saying for years, nice to have some research to back it up.
And I don't believe I said anything about you going back on bisphosphonates did I? It would have been somewhat out of character for me....
Hi HeronNS, thank you for the link to the research article. Sounds promising. I eat plenty of green leafy vegetables and some plant oils but I don't fancy going back to eating lard Mum used to cook with it.
You didn't say that - I did! I had mean to to include it in an earlier post in case it had some negative bearing on my health. It seems that I should reconsider going back on alendronate...
Because s/he didn't know any better? Or you have some other risk factors. I was diagnosed with low bone mass, aka osteopenia, and recommended drugs. But I had other risk factors, not just age. I was on prednisone for polymyalgia, and I'd had a broken leg (tibial plateau, no displacement) within the previous couple of years which they labelled "fragility" although I've always disputed that. However there was enough of a time lag between the scan and drug recommendation and my learning my actual t-score that I had done a lot of research, so I was very confident when I refused the drugs. So glad I did! My t-score was -2, which is really nowhere near osteoporosis, (a number rather randomly selected, btw). With a new reading after a year of my own natural therapies of -1.6, the drug recommendation was dropped.
I had a fractured pelvis 35 years ago and broke my wrist 10 years ago...my only other risk factor is age - 74 - but from what I'm reading that doesn't justify prescribing these drugs!
No, I don't think so. Certainly not a fracture from half a lifetime ago. And wrists are relatively fragile anyway and in my area are not considered markers for osteoporosis - they only use the hip and check the spine as well.
In my opinion, your numbers aren't bad. Certainly not at the point that your doctor should have put you on Prolia. At age 74, I think your numbers are good, but I'm just learning about all this. I am 65 and just learned that my t-scores are -2.4 and -2.5 in hips and -4.3 in spine. I would love to have your numbers. I've decided to not take the medication but to work with supplements, exercise, nutrition, and attitude.
Well..stay strong when speaking with your doctor as most of them, obviously, have NOT studied how awful these meds are!!! I cannot believe he prescribed these for you when you don't even have osteoporosis....
That's mainly because of "Dr. Google," girl! People, and I think especially women, are much more aware these days! We do not have to just trust blindly what these doctors tell us anymore. I've gone against my doctor's advice more than once, and he probably doesn't like seeing me, but that's OK! I will advocate for myself.
Just a question - I noticed you're from Ontario, Canada and do you think you may have been prescribed it this easily due to this being a standard practice in Ontario? I have some family in London (Ontario) and my aunt was also put on bisphosphonates in spite of not having the highest risk factor. There can be a lack of medical consistency in different places. Perhaps they are too overly cautious with regards to osteopenia in your province?
Hi Angelic_89, what you suggest is quite possible. We have MD friends in Ireland and I consulted them. They told me that I would not have been put on Prolia there or in UK...In any case, I am very glad that I found out early on that Prolia is a bad drug!
I say quit the prolia . do not take AA or prolia. You have osteopenia. Actually i think many many many people of a certain age have it. You seem to be doing the exercise right. Listen to Heron and read the book by Lisa Pizzorno . Your Bones. Its terrific. Good luck!
The DEXA scans are calibrated to compare your bones to that of a 25-year-old female, I believe...who the heck has the bones of a 25-year-old woman when you're 40-70 or 80 years old??? That wouldn't be normal in my humble opinion.
Has anyone read Lies My Doctor Told Me: Osteoporosis: How the Latest Medical Research on Bone Drugs and Calcium Could Save Your Bones, Your Heart, and Your Life by Harmony Clearwater Grace?
I have not been able to get the book. Whether it's not available anywhere in the country, or if it is, it's in Ontario where they've had to cut inter-library loan service thanks to their new let's cut all social services including libraries (and health and education and more but there's better access to beer now) government, I don't know. But usually books like this are available so this makes me wonder....
My e-reader is a Kobo, which I only use when travelling. I already checked to see if book was available, but only her books on the paleo diet are listed. One can read Amazon books on a computer. but somehow it doesn't seem worth the trouble.... I really am trying to avoid Amazon at all costs. Mostly I was only curious about a book by someone who calls herself "Harmony Clearwater Grace".
Lara Pizzorno Your Bones is a very good book. Not perfect, but a very good starting place.
I too only read books on my tablet when travelling. I have Lara Pizzorno's 'Your Bones' and have just started it.
I've been recently diagnosed with osteoporosis after a fall on ice in January. I broke My femur in four places. It never wouldn't have broke had I not fallen very hard. i tarted on Alendronate. I did not feel good about it. I took two and stopped it as I had additional bone aches other than my broken leg. Mild heartburn which was new to me as well as mild to sharp gas pains. Two days ago they were so bad I was beyond. Couldn't eat a thing. My thoughts were that if I continued to put this drug into my system the symptoms would worsen. I am not willing to feel unwell. I will try the natural way with exercise, healthy eating and vitamins. K2 etc
I saw my dr yesterday abd told him I stopped. He readily agreed it did not agree with me. He suggested shots. I said no as the side effects were the same along with more added like Celluitis and possible bladder infections. No thanks. He then said he put his Motherr on AA for five years then 10 as a preventive measure. I replied that the studies are not conclusive on results of taking AA after taking a break from it as to whether or not bone fissures still appeared as they did for those women who took ithe drug decades. Anyway he didn't push it further.
DO NOT take the second injection, as I have heard/read that that's when you're in danger of having fractures when quitting Prolia. It's a very dangerous drug....and actually, I would not take any of these bone meds. They should all be taken off the market. Read up and research the side effects of Prolia!!!!
1 prolia injection for me in Dec2018 - no more! Fortunately Dr has agreed to let me try the bone strengthening work plus supplements! My T score was -2.6 in hip 1.7 spine. Praying it goes out of system
Hi Siamang, Prolia is supposed to be cleared from the system by the end of six months...let's hope so. It seems that 1 injection is fairly safe in that you shouldn't have any repurcussions down the road...Good luck
I to am done with prolia. I'm now seeing a nutrition specialist to keep my bones strong. Because I have a diagnosis of osteopenia my insurance pays for it.
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