Getting Off Prolia: Has anyone here... - American Bone Hea...

American Bone Health: Osteoporosis
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Getting Off Prolia

Viazoy
Viazoy
69 Replies

Has anyone here gotten OFF Prolia successfully after being on it for more than a few years? I've asked Amgen but they say "ask your doctor" and the only thing the doctor has to offer is even worse drugs. I had one horrible experience when (because of changes at my doctor's office) I was a few weeks late getting a Prolia shot and as a result had three painful vertebral compression fractures that have turned my life upside down.

Since I can't get around well since that debacle I've been reading a lot more about Prolia and the more I learn the more I want to get off this drug - but no one can advise me on how to do it safely. Has anyone here who has used Prolia a few years managed to get off this drug safely? And if so, how?

69 Replies
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Badsideeffects

I wrote you a long reply but this site will not post my replies I think if you say too much negativity about the drugs they won’t post it

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Viazoy

Thank you and I appreciate this. I already know there is plenty wrong with Prolia. What I am trying to figure out now is how to get my life back after my terrible Prolia experience and 8 months of disability. I'm getting better slowly with a lot of physical therapy and other things but some of the damage and disability I fear will be permanent.

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forwardmotion

Hi, after reading this I went to the official site for the non profit “American Bone Health”. It is interesting to see who is on the board of directors. I am curious to know how they became part of Healthunlocked.

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Badsideeffects

More corruption? Can u forward information to me?

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lawdog

Yes, the medical need and the legal system are sopported by medical lobbyists or others influence where it's available and cost depending on the country it is being prescribed. It has very good results for me amd there are ways to find a way to pay through insurance , medical plans, Eli Lily and to afford the two years it is used.

Osteoporosis is not just major bones. but even the all the smaller ones in the thorastic are of our back we don't even thought we have.

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lawdog

Is this true? That appears unfair to all of us. Did Health Unlocked do this to you and therefore the rest of us on us venue" Huummm,.....UM tends to rather open to such usable opinioms.

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yaelsmith

If you stop Prolia my endocrinologist said that your bones gradually go back to their original base and worse due to a rebound effect putting one at risk for fractures particularly if one already has sustained fractures. She said if you stop you need to go on another medication for 6 months to prevent the rebound effect. Since I have a sensitive stomach oral meds are not for me. Portia is my best option as there are no gastrointestinal issues because it is a shot and bypasses the stomach. Fractures are no fun as I had a bad compression fx due to an accident before I started on Prolia which h also caused mild hypnosis and my spine is not normal.

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lawdog
lawdog
in reply to yaelsmith

Has Forteo (injections) or aReclast infusion been dicussed with you?

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lawdog
lawdog
in reply to yaelsmith

That's true about losing ground if you don't have an immediate substitute med.

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lawdog
lawdog
in reply to yaelsmith

Is Plolia and Portia two different medixatons RX for you?.....or this just a mispell ?

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RobinLouise

May I ask why you want off the medicine and what you will do for your Osteoporosis I ask. ExUae I’m trying to decide what to do. Dr wants me to take forte and it’s making me very nervous

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lawdog
lawdog
in reply to RobinLouise

I was happy with Forteo. Learned that tiny needle daily was no problem. But because it was only tested about two years with remarkable success and the FDA approved it for use, one can only take it the period of time it was tested before approval. First, is your MD a Rheumotologist? I would only one to monitor me. My 12% increase in bone matter where I needed it happen by month 12, but he kept me on it for the additional year to make certain the result would last. Within two weeks after the Forteo was finished, I had an infusion of Reclast which will last a year. The reason I chose Reclast was his response to which of the options he would give his mother. Without hesitation he said Reclast infusion. Meducare paid for it. That was in April. 2019. I'll see him in a few months for blood test and dexagram, but another infusion of Reclast is what I'll be on yearly for a few years at least,

Prolia and some of the other products on the market disturb me.

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HeronNS
HeronNS
in reply to lawdog

The reason to keep teriparatide treatment to two years because it caused cancer in the lab rats and they do not want to subject humans to this possible effect. I do not think it has been shown to cause cancer in humans but the risk is there.

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HeronNS
HeronNS
in reply to Hidden

Here you are: pi.lilly.com/us/forteo-pi.pdf

It looks like there is actually a current study to determine what, if any, risk there is in humans from teriparatide:

ncbi.nlm.nih.gov/pmc/articl...

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HeronNS
HeronNS
in reply to Hidden

The link clearly states the issue about the results in the lab rats. It also states that it is not recommended that teriparatide be prescribed for more than a total of two years. I frankly don't care to discuss this any more. I'm not a researcher. I am not a medical clinician. I am an elderly woman who was given an osteoporosis scare and did a lot of reading. The link which says the medication should not be prescribed for longer than two years is the Lilly prescribing document. What more do you want????

No business will voluntarily limit the amount of money it can make without very good reason. What is YOUR problem?

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HeronNS
HeronNS
in reply to Hidden

You asked for proof and you are an attorney and you find the summary of the manufacturer's dosing instructions, which includes the black box warning, complicated? Fine. But that is it, isn't it? That is the proof you were asking for. And I really felt that you were harrassing me and asking me for something completely beyond my ability to supply. If you hadn't been able to get better information by directly contacting the relevant government agency or the relevant manufacturer then what the h*** did you expect from me, a nobody on the internet????

And no I don't ever lose sleep over things like this.

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lawdog
lawdog
in reply to Hidden

The issue is whether Forteo's risks are so great, that the tested rats cause Forteo be limited to a two years use.

Eli Lily has all the testing procedures and the massive amount tested on those small creatures.

Reading the complete research information puts the above information into perspective.

The "clearness" of incomplete information is not helpful....it scares people.

How many users of Forteo developed osteosarcoma? Does any scared woman know by actually reading the complete testing and results, how many people had a negative experience.

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RobinLouise

Sorry for the typos. The drug he wants me to take is forteo

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HearYou
HearYou
in reply to RobinLouise

Hello. I joined this venue several minutes ago just to let women and men know my success with Forteo. After 18 months of daily home injections, my bone density has increased 12% WHERE my body needed it.. I will take Forteo another 6 months and another testing will be done. Can only take Forteo 2 years, as that was the length of time Eli Lilly tested it when FDA approved its use in 2002.(Forsteo in GB) After 6 months we will need to make a decision about what we will do for medical maintenance...nothing else on the market, unfortunately, works in the manner as Forteo. That saddens me.

After my first vertebra fracture several years ago, my rheumatologist at the medical school in my city, gave me the brochure on Forteo and said this is what he was recommending. His second choice was Prolia (1 office injection every 6 months).

I was stunned. Had no idea what either was, how they worked or the cost.

OK. Then followed nonstop research on every medication available, calls to dentists, periodontist, orthodontists, GPs, and yes, my "female" doctor, as my husband calls him.

I made my decision, found a way to pay for it as my insurance still left a $1,000 co-pay for each 28 day dispenser, and Forteo and the dispenser's needles were delivered to my door.

If anyone wants to know HOW Forteo works so very much differently than anything else, why I chose it, and how I receive the injectors and needles without cost, ask me. Otherwise, I will guess all of you have already discussed this on this venue.

My best wishes to all of us.

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NH33
NH33
in reply to HearYou

My doctor wants me to go on forteo, but I just learned to qualify for medication assistance from Lilly I have to had spent 1,100 on medication for the year and I have not spent that much

Could you tell me how you received your assistance

Ccruze2@gmail.com

Thank you

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HearYou
HearYou
in reply to NH33

Who told you that? Do you live in the US or Puerto? You need to have an income under a certain amount and have Medicare D insurance for certain assistance.

Please PM me.....I have never seen anywhere on the application where you must spend $1100 on meds.......unless that is the requirement of your insurance before it will pay for Forteo.

I just sent a detailed reply to the post that stated she was starting on Forteo and asked for info. See if you can find that reply I wrote. If your income is over $49000 in a 2 person household, you are not eligible to receive Forteo gratis from Eli Lilly.....but I really think that it's your insurance is requiring you to spend that $1100 on meds before it covers Forteo.

Many people who take insulin must pay several thousand dollars on insulin before they are eligible for assistance from a drug company or by their insurance. Forteo can cost as much as $3000 retail for 28 supply, so even if you need to pay $1100 before your insurance will pay for Forteo, that's a great deal.

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lawdog
lawdog
in reply to NH33

Please let me know how everything turned out and how are you doing. That amount of co-pay per monh makes me think that's your insurance. I had a huge co-pay too, much due meeting the income levels of Lilly Cares, they helped me anyway.

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Butterfly848

I am interested in knowing about Forteo and how to get around the costs.

Are you happy with the outcome of Forteo and did you have any bad experiences on it?

I am new to this site. 2nd day. Thanks

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lawdog
lawdog
in reply to Butterfly848

Hi Butterfly848.

Need to know if you are in the US. Have you had more than one break already? Why are you specifically asking about Forteo? There is basically a window in which it will help or needed yet. If you are in GB, you simply may out of luck ever getting Forteo.

Please go back to some the early posts on this site. I left a detailed post as I was ending my 2 years on it.

On the internet read all the info there is about Forteo. Nothing else in the world approaches bone density like it does. Really remarkable; in ways totally opposite than any other med.

I injected Forteo for two years at home. Had a 12% increase in bone mass where I needed it. (The maximum increase is 13%). Now had a GENERIC Reclast infusion to maintain treatment. Good for one year. My MD is a teaching professor at the medical school. I had no reaction to either Fortteo nor GENERIC Reclast. No way to "GET AROUND THE COST" of Forteo....but look up Lilly Cares on internet, and see if your income meets the standards for help from the pharmaceutical company Eli Lilly. And your insurance MAY cover it. BUT TALK WITH YOUR DOCTOR FIRST about what she thinks is best for you, ok.

Wish you well. Let me know what path you take. xoxo

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Butterfly848
Butterfly848
in reply to lawdog

Yes I am in US (Florida) 70 years old and have a very bad ankle break (car accident back in 1970) That is the only bone break I have ever had. Don't know what GB means? I have never been on any bone meds before and now drs said to take Prolia - but don't know what to do about all the horror stories that comes with it.

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lawdog
lawdog
in reply to Butterfly848

GB is just short for Great Britian. Rheumotoloists are the "experts" now concerning osteoporosis. If your MD is not one, see one and ask him your questions. A dexagram and proper blood work can reveal a great deal. Many women start on some type of protection bone loss meds in their 40s and 50s, If these tests have not been done reviewed by a Rheumotologist, maybe it;s time for you to consider it. And congrats to you for apparentely having strong bones. Keep them that way and think about seeing a Rheumatologist and having a dexagram....painless, can be done at the same time as a mammogram if the facility is set for it. Medicare covers most of this two exams and the Rheumatologist.

Is there some reason your family MD wants yiou on Prolia? Have you had a bone densuty scan? I have a close friend who is 76 and her bones are solid as rocks. Her MD has decided just to monitor her.

My sister takes the two Prolia injections a year in her doctors office and has continued her profession and enjoiying her grandchildren; my doctor had me receive a GENERICReclast infusion, as he likes if better that Prolia and only get to once a year. I asked him which drug he would recommend to his mother or sister. Without hesitation he said Reclast infusion once a year, Medicare covered it all.

OH, and I too "enjoy" the heat in Florida lol :)

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lawdog
lawdog
in reply to Butterfly848

If you are near Tampa, I could introduce you to my medical school rheumatologist,

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Viazoy
Viazoy
in reply to lawdog

Thanks - I'm in Chicago. Doctor was an expert in this field. The delay leading to fractures and a year of pain and disability was the result of a change in doctors (one retired; new on assigned) and my case was allowed to fall through the cracks. Simple and needless as that!

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lawdog
lawdog
in reply to Viazoy

Understand. But the system failed you and that caused you great harm. With any future bills or past ones still remaining, I believe they will be forgiven if you ask. You say your current doctor is an expert "in this field". In a soy bean field, a corn filed, a hockey field, bone field, or osteoporosis field? (come on smile at that one).

Do you know how many fractures, where they are, and are they healed?

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Viazoy
Viazoy
in reply to lawdog

I love your sense of humor. Yes, I know how many fractures (3 but also old ones), where the are (T11, T12 and L3), , and their status (healed on their own after several months but entire mid-section left in pain. (I opted against the various surgeries because of problems with these I've read about that looked even worse the where I am now.

I've been blogging about this at JoansBackboneDisaster.com.

And yes, a lot of the things I'm doing for myself are "alternative" so Medicare doesn't cover. On the other hand I've had to cancel travel I looked forward to so that helped cover costs. (Not exactly how I meant to spend the $$$ however!)

A whole day without pain would be a treat but I can't even remember what that was like! But I am able to do more exercise under a great physical therapists guidance so I'm getting back some strength in my legs to walk more easily.

And I still can't get off that #%&@* Prolia - - which is giving problems - without doing more damage. Which is why I wrote my blog; to share my story with others.

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lawdog
lawdog
in reply to lawdog

I feel like I want to hug you and have you ask why Prolia, and tell the doctor that medication scares you,

Ask him about Forteo produced by the Eli Lilly Corporation. If you have had too many fracvtures for Forteo, ask about the infusion of Reclast. Reclast is a simple IV of done once a year and i'm on it and no side effects,

Forteo is a once a day tiny injection that you take for about 2 years, then change to Reclast or something else.

I am a few years older than you. If I found a way to get Forteo, the needles and its travel case, so can you.

You can "chat" with me privately, and I could tell you the process regarding Forteo and how the Lilly Cares Foundation helps with providing Forteo. The way you contact me, is to look at the tope of this page. You will see two little clouds and the word Chat. Press on that and a page will open up with a small gride that asks you to put my moniker "lawdog" in. That should make my name also appear. Then you just send a message. I will answer, and so on. I am going to send yoju a snhort message, when you open to this health site, the little bell at the top of the page you have a private message, Presss on that and there I should be. I open my laptop once a day...depens on where I am and how bad the pain is (truck hit my car)

I would use Forteo again if I could. Really no side effects. And the Reclast infusion in ASpril hasn't bothered me either. Personally I would use either.

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Viazoy
Viazoy
in reply to lawdog

Well thanks but hugs would break more bones!!! I have friends on Forteo - some good reports and some not. The problem is the mode of action may be different from Prolia so even switching to a another drug can be problematic in some instances. I'm familiar with Lilly's program. I don't know if I could handle a daily injection. And I need to do a lot more research on the drug as it would affect me. I was offered the Reclast IV but then it was taken off the table as I was not considered suitable for it and I gave a HUGE sigh or relief after reading more about it. But I"m not totally giving up on it because it could be a way off Prolia. Just might not be for me. I didn't think anyone was older than I am but hey good for you if you can stay healthy!!! Be well!

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lawdog
lawdog
in reply to Viazoy

Understand need to research Forteo before using. I did it for 3 weeks nonstop. Including the actual results. Big difference from other meds is it has the brain send out the "command" to the various hormones, etc. speed up production and not concerned with trying to get body to hold onto bone that needs to be sluffed off. So basically stepping up the increasing bone matter and "shifting it" around the body to find where it is needed, instead of holding on to bone until brain kicks in and new bone produced.

About the needles, that was freaking me out; two friends on insulin laughed. And they were right. The needle is very small, and just with a little pichlike skin on my lower tummy before insertng the needle was not painful at all. Generic Reclast was acceptible to me...but have never been on Prolia. And Prolia is advertised on TV frequently by Spring Byington (sp?) who is dance on stage etc. Yeck.

Curious what were the negative experiences your friends had with with Forteo? Can you share? I had a very hard fall in a wood floor which caused my first thorastic vertibral break. So at my age and first break and off all meds for two years from osteo meds, I was the perfect candidate for Forteo.

And yes, I'm goimg to be around for a long time. 90s to 102 active ages in my fathers side of the family. So I'll do the best I can to understand what will happen if I do not follow MD orders. Have chronic pain issues from very large truck T-boning my Mustang Convertible. Destroyed the car and nearly me. Am doing rather well considering I should have been killed. So I lower the pain level to a tolerable level with epidurals every 4 months. Pain still there, but I can think. Oral opiods screw up everything with me, including my thinking and ability to do much.

Been dealing with this for 35 years; amazing how we finally accept what we can and roll the dice on those things out our control. Have a good rest. xoxo

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Viazoy

I am not a doctor so I am not advising you or anyone else here. It is always a balancing act between the benefits and risks of a particular drug. But I am going into my 9th month of pain and disability because of my Prolia-related incident (described elsewhere on this website) and while I'm better, I do not have a day without pain and cannot resume my usual activities without pain. And the more I've learned about this drug during these months of inactivity the more I want no more of it. As to the other drugs, I cannot speak for them at all.

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christy81256

I did not know anything about Prolia nor this info about this rebound effect. I am on Boniva. After reading all this I think I will continue this path. I hate knowing I have to take this path or run the high risk of fracture. So confusing!

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forwardmotion

Hi Viazoy,

It sounds like you were on Prolia for several years. Can you say how old you were when you started and why the doc originally prescribed it? Was your dexascan osteoporotic? Appreciate any reply, fm.

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Viazoy

I was in mid-70s when Prolia first prescribed. I'd been losing bone steadily and on the border of osteopenia and osteoporosis as shown by DEXA. Prolia did not stop the loss but it slowed it. The three vertebral compression fractures occurred during a short delay when the prescribing doctor left the medical center. I've been in pain and greatly disabled for over eight months now. While slowly improving some disability and deformity will likely be permanent. I've since learned much more about the ill effects of this drug and would like to get off of it without suffering still more fractures.

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forwardmotion

Hi,

I had no idea that stopping Prolia results in multiple vertebrae fractures. I was just reading the healthunlocked Bone Health forum and there are many more people on that site with experience taking Prolia. You should head over there and do a search for Prolia. This site, “American Bone Health” doesn’t get enough traffic for the advice you seek.

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Viazoy

I'm Health Unlocked right now

What is American Bone Health?

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forwardmotion

Healthunlocked has 2 bone sites. This post is showing under the American Bone Health site. I noticed your 1st post a few months ago was posted under the Bone Health site run by NHS.

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Viazoy

Thanks - I'm in the U.S. I thought I was on a Health Unlocked section for osteoporosis -- I'll check this out -- thanks for letting me know!

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forwardmotion

I like the other site better, the one that is just called Bone Health. It also deals with osteoporosis but there are more members so more info. I live in North Carolina.

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walkmax

How does a person get to that site? Bone Health?

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forwardmotion

If you go to the “Browse Communities” section of Healthunlocked and type in Bone, both communities will show up,

“Bone Health” and “American Bone Health: Osteoporosis”.

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Viazoy

Thanks. I’ll look for this

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lawdog
lawdog
in reply to Viazoy

You are on a bone health osteoporosis site. Think is one is fairly new. And you will find another osteoporis bone health site that have been around for awhile and appear to have more women on it from GB.

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Viazoy

Thank you. I’m still finding this confusing and am not always sure which section I’m on!

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Viazoy

The labeling (drug information) that you should ask for warns against “stopping” Prolia or fractures could occur. They tell you not to “stop” the drug without consulting your doctor.

However I could not find the word “delay” anywhere in Amgen’s information, and the short delay leading to my fractures actually resulted from a change of doctors at the medical center.

I have called Amgen several times at their consumer number (800-772-6436) urging them to add the word “delay” to their warnings but so far they have not done so. It’s too late for me but I’d like to warn others.

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lawdog
lawdog
in reply to Viazoy

Your doctor should have told you this, don't you think? Was he a general pracitioner or a Rheumatologist? I am learning a number of GPs in this area as well as gyns have never had a patient on Forteo or Reclast.

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Viazoy
Viazoy
in reply to lawdog

Doctor was a bone specialist at a university medical center. The reason my Prolia shot was delayed leading to painful disabling fractures was because of delay occasioned by a change in medical personnel (retiring doctor). It was an administrative CLERICAL error, not a medical one or a patient-caused one!

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lawdog
lawdog
in reply to Viazoy

Oh, understand, but did you have another bone problem besides osteopenia that a 'bone specialist" was needed to cover that issue as well as osteopenmia? I promise I am not trying to dig into your personal affairs. I was stunned when I found out my infusion to help my osteoporosis is widely used to be infused in cancer patien on chemothery to reduce the amount of calcium in their blood. (I had to stop one of the infusion nurses as she was upset when my Reclast was too low to do any good as she assumed I was there due to canccer.)

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lawdog
lawdog
in reply to Viazoy

I am so sorry, that surgeons didn't inject a liquid medical compound around the breaks, That substance hardens quickly and prevents the vertibrae from collapsing.

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yaelsmith

According to my endocrinologist there is a rebound effect when stopping Prolia which means that not only do our bones revert back to before but are worse and therefore one has to be on another medication for 6 months to combat the rebound effect.

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Viazoy
Viazoy
in reply to yaelsmith

Yes, that is exactly what happened to me!

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lawdog
lawdog
in reply to yaelsmith

Oh, Prolia has bones to hold on to the natural sluffing of old bone until the brain has sent the message to hormones to produce new bone matterial. Have read this can cause some brittle bones as the old bone matter is being sandwhiched in under the new bone. If Prolia isn't in one's system to tell the old bone when it's finally ok to sluff off at the point the new matter is coming, out off hormonal habit, the old bone just keeps hangiing on even when the new bone mater has arrived?

Does that make sense? I'm trying to understand how Prolia works, so if it's gone sunddenly, what is the body doing?

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Viazoy

Has anyone here done this? Gotten off Prolia with another drug for 6 months? Successfully? And with what drug?

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lawdog
lawdog
in reply to Viazoy

Have you ask your rheumatologist? If I didn't select my his first suggestion of meds, the Reclast infusion was his second. But Forteo works slowly, so a two week gap before switch from it to the Reclast infusion was not an issue, Never mentioned Prolia.

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Badsideeffects

I just stopped because of the bad side effects. I had two shots. I have the same intense severe back pain that I developed from the Prolia shop. I am bedridden now S1, L4 L;5 areas. No good doctors here to diagnose properly. To make matters worse, a neurologist misdiagnosed me with Parkinson’s disease. I did not know how addictive the levodopa carbidopa is. It alters your dopamine and no I cannot get off the drug. Good luck hope this helps

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lawdog

So sorry this is happening to you. Was one of your doctors a rheumatologist? I am beginninmg to think there is trend here of Rheumatologists not being iinvolved and the prescribing MD not fully aware of Prolia's side effeccts. Where are the Prolia injections given to your body?

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Viazoy

Doctor was a bone endocrinologist at major health center. You can read what happened in my blog JoansBackboneDisaster.com. Basically there was a brief delay in Prolia shot when one doctor left and another came in and no one caught it and that's when my bones broke. Prolia is creating other problems for me too but there seems to be no SAFE way off. I am so terribly sorry I ever let them start me on this drug!

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