Osteoporosis and what about Prolia - American Bone Hea...

American Bone Health: Osteoporosis
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Osteoporosis and what about Prolia

I am 70 year old female and have been diagnosed with osteoporosis in the AP Spine -1.8 and the Dual Femur Neck of -2.0

Was recommend taking Prolia but still doing research on it. I have had 2 implants (2018) and need a root canal done on my lower back tooth. I need to find out more about the Prolia and what does it effect in the jaw because I don't want to loose any of my teeth.

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The biggest problem with Prolia is it seems once you start taking it you may never be able to stop because of the risk of rebound osteoporosis. If you look in on the Bone Health forum based in the UK ( healthunlocked.com/bonehealth ) you'll see lots of discussion, including people who have had serious side effects from the drug. Others have been all right for the first few doses and then develop side effects. It does work well to improve bone density but the down sides are very scary.

HOWEVER your t-scores do not indicate you have osteoporosis. You have low bone mass, usually called osteopenia. And it is no longer considered best medical practice to prescribe bone meds for osteopenia. The level at which osteoporosis is considered to start is -2.5, a number, btw, rather arbitrarily decided by the WHO a number of years ago. Unless you have other risk factors, especially fractures, you should seriously consider using only natural means to maintain and possibly even improve your bone density. No risky side effects!

Have a read of this: healthunlocked.com/pmrgcauk...

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Hi, Butterfly848! Here is some information on how to prevent some *rare* side effects of certain drugs for treating osteoporosis. These side effects are more typically associated with very high doses of the drugs, like for chemotherapy in cancer patients. americanbonehealth.org/medi...

But Heron is correct that your T-scores are above the range that is considered osteoporosis, and that there are a variety of factors beyond these numbers that your doctor should use to determine your management plan. Feel free to browse our site for more information on this! americanbonehealth.org/bone...

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THERE IS NOTHING 'RARE' ABOUT THE NEGATIVE EFFECTS OF PROLIA SHOTS! YOU DO THE RESEARCH -

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Whoa.....please don't stomp on this man who cares enough to share medical information. Youi sound very angry and upset. What is it about Prolia that set you off? What happened?

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Please do not let the doctors talk you into taking any of these bone meds! The side effects (and Prolia is the WORST) are horrible and can cause major health issues, as you will find out once you start researching. They should all be taken off the market in my opinion. AND if you want to come off of Prolia...after a second shot..it's impossible to NOT go on another kind of bone med. I wish doctors would get a clue!

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I'M OFF PROLIA AFTER 3RD SHOT ALMOST RUINED MY LIFE....DON'T TRUST ANYTHING ABOUT ANY MEDS NOW FOR OSTEO. ON CALCIUM - SOME D3 AND EXERCISE - THE 3RD PROLIA SHOT AFFECTED EVERY BODY SYSTEM FOR ALMOST 4 MONTHS - EVEN MY EMOTIONAL HEALTH - AND NOT (EXTERNALLY) FOR THE BETTER -NEVER AGAIN! I FEEL THIS IS MONEY MAKING EVIL STUFF - NO MORE TRUST AUTOMATICALLY FROM ME - EVER AGAIN!

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I'm so sorry you had to get educated by actually going through this hell! I hope you are better now....

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Only one shot destroyed me for 14 months so far. Only recently is the severe thigh bone pain, upper arm pain, lower back pain, muscle spasms (Charley horses), weakness in legs, etc. slightly and slowly improving. Also, in the beginning, within 6 weeks of the shot gained 20 lbs!!!, hair was falling out, red scaly patches on face, sinus congestion, etc. Awful drug for me!! Fortunately, I went off it after the one and only shot so should be okay re: spontaneous fractures of vertebrae.

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I was convinced I needed to be on something for my severe osteoporosis. Prlia was prescribed and I took it. Worst side effects ever. Several fractures. Did more research and came across hundreds of others with worse side effects. Went back at 6 months. He was expecting to give me shot #2 and I refused. He was beside himself that I not only refused it but any other med. I used Fosomax for 5-6 years only to discover all meds for osteoporosis are limited to 2-3years MAX. Anything more is risking further damage.

Recently needed an abscessed molar removed. The swelling in my face was horrendous. Sitting in oral surgeon's office and asked if I'd ever been on meds for bone loss. They almost wouldn't remove the molar due to over the top risks to jawbone infection and necrosis of the bone. They won't work on teeth if it's been less than one year since taking this med. Luckily it had been almost 2 years. I have other health problems contributing to the issue but personally I would never ever recommend anyone to take Peoria. I think your age also is contrary to benefits overall. Speak with your healthcare team consider pros and cons. I normally wait 24 hours before making a similar decision but felt pushed into making this decision immediately. I won't make that mistake again. Wish you well. Blessings

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Prolia

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FYI you can edit your posts and replies. Just click on 'more'

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Yep, I, too, had awful side effects and am now never going to take any other osteoporosis drug. I'm trying natural things. I haven't fractured so far, but have had bone pain everywhere, muscle spasms, and more. After only one shot. Never again!

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Yes...and these dexa machines! They are calibrated for a 20-year-old woman's bones! Who in their 60's to 80's expects to have the bones of a 20 year old??? Just ridiculous. I think the whole osteoporosis scam is truly a scam!!!

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Ty. I agree. Medicine/doctors scam. Prolia is the devil shot... give you something to make you sicker so you have to come back for more sicker medicine…

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Perhaps for many. I know mine is real. I used to be 5'7" now I'm 5'3" due spinal compression fractures and scoliosis from my bone loss due to long term dialysis and parathyroid issues. I've had finger, toe, rib, arm, leg, neck and back fractures. First was in 2009 last one was in 2017. I must be cautious about not tripping, falling etc. Even back in 2003 I fell and had bruises on the bottoms of my feet. Had x-rays done and told they were difficult to read as the bones lacked the necessary calcium and were too transparent. Blessings

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I'm so sorry for your troubles, KidneyCoach.....hard journey....

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Please don’t get talked into taking a Prolia Shot. It will destroy your life. I have had to Prolia Shots; used to work out three times a week. Now I am bedridden with terrible terrible back pain...Go to site “AskaPatient” and type in Prolia. Good luck God bless you

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So sorry what happen to you. What are you now taking for your bones?

I don't know what to do. My Gyn, Family Doctor and my Oncologist all insist on me taking Prolia!

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Well..just tell them all no. I talked my doctor into giving me HRT (Hormone Replacement Therapy). It will build bones...I'm taking the smallest amount possible and am not worried....

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Sweetsusie, do you know if there’s an age limit for hormone therapy? I read it’s only for post menopausal women no more than 10 years into menopause. But I read somewhere else that a woman in her early 70’s was taking it in Europe—in the form

Of low dose bio identical Hormone therapy. The doctor I inquired with just scoffed —oh well that’s in Europe, not here. Me thinks there’s not as much profit in hormone therapy!

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Well...after the WHO big study regarding HRT, many thousands of women were scared off of it..me included...but my doctor finally agreed to put me on it..I just turned 72 and started HRT when I was 70. It has changed my life...no more hot flashes...no more night sweats...etc....I think doctors (not a lot of them, though), are rethinking their thinking on HRT and realizing that that huge study was totally skewed and not reliable. DO NOT let them talk you into those terrible bone meds! You can get much good advice on here about what to do to help your bones.

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Thanks for your response sweetSusie, I heard the HRT studies refer to possible heart issues after a certain age when using HRT. Did your doctor offer what is called low dose bio-Identical HRT by chance? And can I ask if you were well beyond menopause by more than 10 years when you started? That’s seems to be the major obstacle they use.

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My doctor prescribed: estradiol/norethindrone combo because I still have all my parts. Smallest dose possible and it really help...pill form. This pill is not bio-identical. Yes...I am well beyond the 10 year menopause point..I'm 72 and went through menopause many, many years ago. My doctor is a progressive thinker and I was able to convince him to put me on the HRT. I'm not worried about heart issues or breast cancer....

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Thank you—do you think endocrinologists would be more open to HRT? Was your doc a regular RA doc or ——-just trying to figure out why so many docs only push the harshest drugs our way—In England the profit motive should not be there as much but it seems the same high priced drugs are pushed there too—-

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Hmm..interesting question...I called a couple of them when my regular doctor said no to me, but they also said no way..so then I switched doctors and this one has been really good about things I ask him. He's younger...I feel like his Grandmother! HA! But, maybe the younger ones are a bit more open minded. I hope you can find one that is willing to let you try HRT. Yes...my doctor is a regular doctor....just a general practitioner. Keep me posted!

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Thanks—good to know! You’re lucky you found someone—a general MD may not be as programmed!

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What is HRT? Is that the med GB discontinued and now making it available again? Thank you. I wish you well.

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HRT stands for "hormone replacement therapy." Yes...when the WHO (world health organization) did it's big study back in the day, a lot of women were scared off of HRT, but how it's found that the study was skewed, so a few doctors are prescribing it once again.

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I have osteo and am in agreement re Prolia and osteo drugs BUT please be careful re HRT - it caused breast cancer in me. No family history and I was definitely not in a BC risk category so it was a surprise. Oncologist blames it on HRT.

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I'm so sorry, suggi! I do think about that....

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My sister is taking Prolia twice a year and is well, continues her executive HR position , enjoying her family and grandchildren. She and I talked about Prolia and Forteo. Every one if us is different in our physical composition, and I was concerned about her decision, but I know to "stay in my own lane." She is a well educated successful business woman.

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There are a couple of detailed articles on the American Bone Health website on ONJ (osteonecrosis of the jaw).

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Oh, yogalibrarian, I found you again!. We have an American Bone health/Osteoporosis venue now...very young...but sometimes the questions and answers come mixed with this venue in GB. I have entered a post looking for you...could not remember your "yoga" part of your monager....and I had to change mine from Hear You to another....so I am Law Dog now. You always seemed to be up on news that I didn't know. Hello, hello, hello again! Are you well? :)

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Thank you. I read a lot of news feeds -- and I answer a lot of questions. I think it's an occupational hazard of librarians (even semi-retired ones). I teach yoga, tai chi, fall prevention, and osteoporosis exercise programs. My students alwasy have questions so it keeps me tuned in.

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Well, I told you in the past that you were actually "YODAlibrarian." May I send you some information about me and whther or not I should be looking into the HRT some of the members are considering? Nothing gory or weird, just private for some input.

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Butterfly, I have left you a private message regarding Forteo and how to afford it.

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Have your dental work done before Prolia because thee may be some jawbonme loss after you have been on Prolia. My dentist said no to Prolia, Went with Forteo instead which was my doctors recommendation anyway. Now I am on a yearly Reclast infusion (IV). No side effects from Forteo or the Reclast infusion......except happy news. The Forteio increased my bone density where I needed it bny 12% during the first year and maintained that until the end of the second year when my time on Forteo was used up.

I sent you a privatye message about Forteo. Justn press the "Chat" word at the top of this page and I'll be there.

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Hi lawdog, I’m interested in Forteo too as it seems to make more sense but after 2 years max, you have to go on another one—-and isn’t reclast a bisphosphonate—with the side effects of cracks and fractures and possibly esophagus issues? It’s good you had no side effects yet....thanks. ( just curious why you didn’t start with reclast as you had to end up on it anyway. ) I’m still unsure what to do.

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Hello. why Forteo first even though I would need to leave it about two years later?

Because Forteo creates and Reclast maintains the creation. And the Reclast is obsorbed directly through the body instead of taking tablets through the stomach and digestion system where the actual absobant rate can't be measured.

I would have taken it for ten years if I could. No futher testing past approximately two years was continued when the USFDA was very impressed and approved it's use in 2002. It's safety and results have been tested throughly for approximately

two years, but not tested for ten years....so need a maintenance med to not lose the remarkable 12% increase in bone density WHERE I NEEDED IT by the end of the first 12 months. I did not END UP with Reclast ...chose it under my physician's recommendation because of good resuts in KEEPING that 12% increase created by Forteo. Know what the average increase by Reclast bone density is....maybe 2% or 3%.

So I choose the best t for me to increase my bone density after my FIRST BREAK when I fell hard in a wooden floor in a seizure. Now choosing the best to maintain that 12% and only one infusion is required each year.

I have never been actually diagnosed with osteoporosis.....was being treated for osteopenia, with a year vacation from any med occasionally.

But when that fall haopened, the hospital found actually an old fracture in my thorasic area. It was braced internally by the surgeon so it will never collapse. None the less, it was THE FIRST KNOWN fracture and that is actually the time to start Forteo Forteo does not mend existing fractures; it slowly seeks out WHERE one's body is needing more bone density. But well worth waiting almost 18 months to learn Forteo was still at that 12% increase in bone density. Now I am helping my body keep that density by using Reclast for several years or so. Then maybe something better will be available, and I will use it.

(Oh, probably more women udergoing chemotherapy for cancer use Reclast than for ospeoporosis as their blood may develop too much calcium)

I don't get greatly disturbed by all the side effects that people discuss......they are usually very , very slim occasions if you read the actual detailed information of benefits and undesirable side effects.

I truly believe one gets what one pays for or listens to. My rheumatologist is a teaching professor of a prestigous medical school that is part a university 30 minutes from my home. I'm betting on him, his advice and explanations rather than being too afraid to make a decision during a critcal time frame. Where would I be now if I had declined Forteo, and more fractures occured and it was too late for Forteo to be effective?

And there is a human hormone component to Forteo. My gyn endrochronologist referred me to the rheumatologist.

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Forteo, or teriparatide, is only allowed for two years because in the testing phase cancer developed in the lab animals. There is no data on what might happen with extended use in humans so the regulators are attempting to limit any risk.

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Where did your inside source of this twist to the testing information of why Forteo was approved ? Question it. It is getting old.

I am not a rodent and was not given a huge quantity of Forteo and have no side effects. Do you even know of anyone receiving more that the recommended dose? Have you ever even met a woman who even completed the Forteo regiment? Well now you have.

I am keenly aware and understand there was the cancer issue with the rodents who received extremely high amounts of the Forteo. But reviewing the testing on humans does not duplicate this. This rodent testing result pops up periodically on this venue without any authoritative results of the medical information concerning the health of people after their use of Forteo.

Since it's introduction study, thousands of patients are followed by Eli Lilly's Forteo Connects. I am not an easy sale; my specialist has treated thousands of women with Forteo and stays up to date with medical information for the post Forteo tracking and shared that info with me. I am a member now. If women agreed to be tracked for decades after their use of Forteo for me, I owe it to future women who are considering Forteo.

Nothing is risk free....not even a day of life. Until I learn of any medication better for me than Forteo, let me know.

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Sorry, I was just explaining why there is the limitation. It's certainly not a secret! I find your defensiveness rather peculiar.

Here is just one of many sites which explain about the possible risk for osteosarcoma:

sciencedirect.com/topics/ne...

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You missed my point. I am neither defensive nor peculiar....You became defensive when I challenged your source, so you looked one up and sent a science website......Means you have had no experience with or know anyone how has used Forteo. So why keep bringing up that rat study if one doesn't know if it alters the effectiveness of Forteo?

This venue appears to be a rather new one out of the US. There are two others concerning Osteoporosis and Bone Health which have been around longer and appear to have a large number of women in GB as members. And some very sad and scared women as they don't pay for healthcare, but don't have a choice for the meds received.

Forteo just became such a target for them for awhile because it didn't help....but it is only rx as a med of last resort, instead of first and does not mend fractures. Only receive it if the woman can't tolerate any other med available or as last resort when the women have massage damage and pain. Really think the cost of Forteo prevents it being provided there, then not during the window when it can help. And some have expressed that we have a terible health system as we must pay for health care, when theirs is free.

I grew tired of being told by the women in GB what a terrible choice I had made, and explaining all the problems it creates......duh....And what a horrble health care system we have because it is not free

Yes, we pay through insurance premiums, etc, but we have choices. They don't.

I am curious, have you ever met anyone who has used Forteo? and side effects reported? or the benefit realized? It actually works entirely in the reverse of evrything else available in the world.

I am not defensive, just tired of explaining that old rat testing. Which you really did was pass on the incorrect reason why Forteo (Forsteo) was approved. I talked with The USDA folks about that. And studied the results on the women tested carefully. Nothing else is producing anything like a 12% increase in actual bone density with actual bone. And I did.

On a realistic and more appropriate use of time is to ask how women personally are doing on Forteo so now am asking that question. Because I really would like to know and meet as many women as I can that have used Forteo or even met anyone who has inspite of that rat test result. I have met quite a few as now their gyn and family physicians are rx it . Main complaint is some women get inject site bruising.....either they are thinner than me or have not remembered to place the tiny needle straight in, not at an angle.

Literally thousands through the years have rx Forteo through the medical school Rheumatoligy department/clinic here. It's been several decades now, and they are not seeing any effect of that rat study showing up.

So it's time to look at what Forteo is doing, not what had happened with a rat test decades ago. It's the attorney side of me. I never like not knowing what I should know and so I ask questions and then want to talk to those affected I want to know how are we (the end users) doing with Forteo now.

Please don't tell me you live in GB...I apologise for anything that might have offended you if you do. There just wasn't any help there.

Have a good evening. Thanks for "hearing me out" on my position that I think there is something to help us when there has too little. xoxo

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I do not live in the UK. I do live in a country with universal health care, however. I refused to take bone medications. I improved my bone density from -2 to -1.6 in one year between DXA scans although I was at the time still taking a dose of prednisone over 5 mg for most of that year. Several years on I still need pred and am on a lower dose. Due for another DXA scan within a year or two. I used only exercise, nutrition and a few supplements. I am very pleased that your drug of choice has worked so well for you. We are all entitled to our opinions and we all have different experiences. I do not think anything I have written in this thread has told people they should or should not take any particular medication. I have expressed the facts as I am able to find them through my laptop, and I do try very hard to quote only legitimate sources. If there is anything I have said which is out of order or blatantly false, please let me know and perhaps you should also report my post to HealthUnlocked if you feel I am deliberately misleading people?

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Although I will tell people not to take Prolia, for reasons I'm sure you are well aware of.

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You state in your above paragraph you do not tell anyone what medication to take; then do that in your above sentence.

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You have not answered my straightforward questions of whether you have ever met anyone on Forteo or had completed the regiment of Forteo? And were there negative reactions? You haven't have you?

I have. And I have completed my Forteo with expected resuts of 12% increase in my bone density WHERE I needed under the direction of a highly respected and experienced Professor of Rheumatology at a medical school. Thousands of women have been cared for there for osteoporosis and osteopenia. No cancer reported from the post tracking of the patients.

Enough said about Forteo and those rodent tests decades ago.

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I have actually referred someone to this thread who did not want to take Prolia but has very bad t-score, as I thought she would be interested in the alternative of Forteo and Reclast.

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Still not said whether or not you have ever known anyone on Forteo? :)

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I have no life, I don't know what meds my friends are on.

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Just thought maybe you had met someone at your doctor's office, ok?

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No, 'fraid not. I just go to a GP, not a rheumatologist.

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The only person I know who has said they have taken a bone med is my sister-in-law who was given Fosamax but stopped taking it quickly because of side effects. I don't know what the side effects were. My mother-in-law fell and broke her arm. In order to encourage the healing she was given an injection of something. I don't know what it was, whether a medication or Vitamin D. Within a short period of time, weeks probably, she had a massive stroke and died a month later so that was the end. She was ninety-two. So that's the extent of my personal experience of OP drugs and hopefully there will be no more.

I'm only an ordinary person. I do try to be accurate in relaying information. As I believe I said in another post to you if I've said anything blatantly inaccurate, please tell me. I'm not flogging anything. I only transmit what I've learned which has helped me. If I hadn't improved my own bone density so that the recommendation for drugs was dropped I would not be doing this. I want to give people who are still in a position to improve their own condition without the use of what are, face it, very serious medications which can come with a whole suite of life-altering side effects, then I want to give them hope and point them in a direction where they can then find their own way.

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All's well. No worries. You live in a great country north of me. Canada really does seem to use its health and wellness resources carefully and with care. xoxo :)

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Your t-scores indicate osteopenia, not osteoporosis.

This was an eye-opening read for me.

npr.org/2009/12/21/12160981...

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Sorry I posted my T-score wrong it is -2.5

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Have you had a fragility fracture? If not, your scores are osteopenia, not osteoporosis, in which case prolia (denosumab) isn't even recommended: medpagetoday.com/endocrinol...

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Hi Butterfly...you and I are very close in age....you being the younger. Prolia and Reclast infusions could in some cases. effect jaw bone. My doctor would not do the once a year Reclast until after I talked to my dentist and he gave the go ahead, If I had needed any seriouse dental work done, it needed to be done before Prolia or Reclast infusion.

Originally I was on Forteo and left a number of Private Messages about it. I had a bone denisty increase of 12% within the first of the two years on Forteo, That's great results with no side effects. But I need to have a maintenance program so I don't lose that good result. Prolia was not mentioned to me, but the Reclast once a year infusion was the recommend approach. Took about two hours total for a blood test to be certain my kidneys were functionaing properly. Then the infusion was started through a small IV in my arm. That was two months ago and no side effects so far.

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Hi, I have been away visiting my family up north.

I have had 2 implants last year and I still need to have a root canal but have been dragging my feet about it because I really hate dentist work and then i know I have to decide on what process I need to take for my bones. Never took anything but calcium pills -- had breast cancer 11 years ago and was on cancer pills plus radiation. Before that I had always had good bones. Now I know its because of my cancer stuff that I took or did. They want me to take Prolia but by dentist say not yet until I get all my stuff done - root canal if they can do it because I have calcified roots and they are not sure if he can do it.

I an very active in my garden, but I do have a lot of back issues (bulging discs and sciatic never pain down my leg} get the epidermal shots now and then.

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Ahhh. You are a Survivor. For so many years. I respect you for the battle that you had to fight. Bulging discs are not fun...I had some physical therapy exercises for some that seem to help. The therapist was a young man who coached and umpired Little League baseball; he had to do the same exercises as he would be aching in his back from the positions he physically did every game.

I have no idea if the Prolia is being [rescribed for you because of your previous cancer care.. Perhaps you can ask your doctors why Prolia? Forteo really may be a good alternative to build bone density if you have not have many fractures. It really is a puzzel for you. Reclast is used with chemotherapy sometimes if there is too much calcium as a result of the chemotherapy. I am going to try to join the Bone Health or Osteoporosis venue to see if a member with the name " librarian" is still there. She may have some insight into your situation. I'll let you know if I find her.xoxo

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I still have not been to my dentist or to have the root canal! But I am going to see my doctor and find out about Forteo and why are they telling me to take Prolia. I don't want any more damage to me teeth from Prolia.

Thank you for all your advise one Forteo. Good luck with your health and let me know what you are going to take now that you have been on Foreto for two years.

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Check with the company that makes Forteo before deciding on taking it. If you had radiation to the skeletal area they advise you not to take it.

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In case you haven't seen this yet (I seem to be posting it everywhere these days):

healthunlocked.com/pmrgcauk...

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Have the dental work do e a d DON'T Take prolia. Read the book

YOUR BONES BY:LARAPIZZORNO

IT'S AT YOUR LIBRARY.

l

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Very helpful book. I read the library copy, then bought the kobo edition. Also recommend Vitamin K2 and the Calcium Paradox by Kate Rheume-Bleue and The Magnesium Miracle by Carolyn Dean.

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Thank you. I will get the book from library.

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