Has Anyone Stopped Prolia with No Fractures in... - Bone Health

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Has Anyone Stopped Prolia with No Fractures in the Year to Two Year Period After Stopping - Please Share How You Did It & Recommendations

Me_oww
Me_oww
73 Replies

My fifth Prolia shot is due in March 2019. Because of side effects I'm having I want to stop doing Prolia. I recently found out about the serious nature of the rebound effect. So I made an appointment to see my primary care doctor and inquire about a protocol for discontinuing Prolia Got no acknowledgement that there is even a problem and any questions I had produced a run around that provided no answers. MY QUESTION here is has anyone successfully stopped Prolia in that say by a year to two years down the road after you stopped you did not get any fractures? And if so please share how you went about doing this, did you get help from your doctor and what advice would you give someone else that wants to stop Prolia.

73 Replies
oldestnewest

I also stopped Prolia due to side effects, (Osteonecrois of the jaw after a tooth extraction) I am so angry with my Primary doctor for first putting me on that dangerous drug and then after learning about my mouth issue, took me off without any follow up. She obviously doesn't know about the dangers of stopping Prolia. Thanks to this blog and my own research, I am aware of the rebound effect, so I told my Orthopedic surgeon about my worries about Prolia side effects and its increased risks with my upcoming hip surgery, he recommended I see a reumataoligest and I 'm glad I did.he is quite familiar with these drugs and confirmed my fears. I can't switch to the typical alternative family of drugs (like Boniva) because they too have the risk of osteonecrosis of the jaw. It ha only been a few months since I stopped Prolia, and my bone reabsorption rate is still good (done through a urine test) I see him again in February, and if my bones are changing he will put me on something (still not sure what drug - he mentioned maybe daily injections) Meanwhile I have postponed my scheduled hip surgery for fear of fractures and infection risk with my mouth still not 100% healed (since last June!!)

My anger and fear is mounting, as is the difficulty walking. I am trying to tolerate pain as apposed to taking things like Advil or Aleve every day for fear of damage to my organs.

This has changed my life!!! No tennis, no hiking and no energy, just a cynical attitude.

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purpleraindlk

You may be put on Forteo daily injections for 2 yrs. I just finished that, and had no side effects. However, it did NOT increase my bone density, but it stayed the same. Now, I'm taking a Rx supplement as did not want to take Prolia.

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angryandfrustrated

Thanks for the info. Did you give injections to yourself, or did you need to go in somewhere every day? Neither option sounds ideal...but I need to get on something.

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purpleraindlk

Yes gave myself injection........... very nervous at first but it was pretty easy and not too painful...........sometimes it would sting if I didn't do it just right, other times no pain at all. Get the shorter needles if you end up on it. The first time or two, I felt some slight dizziness but after that nothing at all. I wish I could have stayed on it longer, tho given the fact it did not increase bone density, maybe not. I do need to be on something but just can't make myself do Prolia or the bisphosphoneates or Reclast etc. Really hoping the Rx supplement will help me maintain...........

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tikigod18

angryandfrustrated: when you say "you have to get on something", why not try a natural protocol? Vitamins, minerals, weight training, lots of walking, etc. When I see the ad for Prolia, I watch the people in the ad while the side effects are listed. I realized I did not have the "normal" risks. I live in warm weather, no ice to walk on. No pets to trip over, no stairs to fall down, I hold on to shopping carts to avoid any wet floors, no grandchildren around to have toys to slip on, etc. My ACTUAL risk of a fracture is what I feel is an acceptable risk, I work out a lot, take all the right supplements, and am willing to risk a fracture rather than have my life ruined by a side effect, and be financially chained to an injection for the rest of my life.

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angryandfrustrated

I am doing what I can: I take slow release 1200 calcium, and a high dose of Vit. D , Glucosamine Chondroitin, and I eat a sensible diet. I use to walk about 3 miles three time s a week, play tennis 2 to 3 times a week and Yoga twice a week. I currently do aquatic therapy and walk about 1/4 to 1/2 a mile. I grimace in pain most of the time. My hip x-rays show bone on bone from osteoarthritis. No amount of exercise is going to make the hip problem go away. The cartilage is gone. Right now I am trying not to allow my body to de-condition. When I exercise I aggravate the hip joint, so I use ice and take anti-inflammatory drugs (Aleve), but sparingly. I also take Turmeric. I need a hip replacement, bottom line. but a side effect from Prolia has prevented surgery (Osteonecrosis of the Jaw). Once I got ONJ they took me off Prolia. The rebound effect and increased risk of fractures is why I need to go on something - I want to get my hip surgery but infection and fracture risk has me on hold.

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Daisychain12

Oh I am sorry. I hate that bastard drug. Xxxxx

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Roseyinthegarden

I’m so sorry that this has happened to you. It’s a shocking situation.

I take an aqua based full entourage CBD, as the cannabinoid receptors play a role in laying down new bone - every little helps.

ncbi.nlm.nih.gov/pubmed/213...

If you’re interested in CBD, I’ve written up some tips for getting started, based on my experiences gain over several years, here in the UK. Let me know if you would like me to send it to you, via the HealthUnlocked message system.

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angryandfrustrated

I would love to hear more about CBD, thanks. As you say, every little bit helps.

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Roseyinthegarden

Sending it to you now.

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Viazoy

I am interested but I don’t know how to use this message system

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Roseyinthegarden

Hi Viazoy,

To send a message, click on someone’s name and a blue message button appears in the top right corner, click on that and the message page appears. You will just get an email notification saying you have a message, click on that and the message appears. Notifications also appear in the last st when you press the bell symbol above.

I’m just updating the information, I’ll get it to you as soon as I can. 🙂 Rosey

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Viazoy

Thank you for this. I didn't know how to do it!

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tikigod18

angryandfrustrated: What a mess. I am so sorry for what you are going through as I think we all are. I will keep you in my prayers.

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Me_oww

Thank you for writing and sharing what is happening for you regarding Prolia and your bone issues. I’m glad that you were able to connect with a doctor that is more knowledgeable and helping to guide you. I hope that your whole situation gets sorted out and you make your way through this to a place of wholeness again. I hope that the coming new year brings you a pathway to good health and a renewed outlook on life. All best wishes!

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angryandfrustrated

Thank you for your kind thoughts.

Happy 2019 for both of us!

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Seacrab

Hi angry and frustrated, I am too. Scheduled for my next injection this month and my oncologist/internist is clueless as to the association between my side affects and/or the risks of discontinuing treatment. I went from fit and limber to cannot walk without pain, heart palpitations and aching limbs. I hope you find help, and I hope you share it when you do.

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mahughes

I had only 3 Prolia shots I'm 65 but because of this drug I developed Neucrosis of the jaw because of an extraction. I took antibiotics for 1 week it cleared up the gum issues but my mouth and jaw constantly hurt all the time. the oral surgeron is waiting 1 month to see me but the excess bone sticking out of my neck wasn't there before the extraction. this is a rare side effect.. other oral surgeon told me might have to see Periodontist.

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Kaarina

I have not taken this drug. I had a narrow escape in avoiding it thank goodness. In my humble opinion, it would be unwise to be any length of time before getting on to some other OP drug at the time you should have your next jab. The alternative is to continue with prolia. :( As you are having side effects you obviously do not wish to tolerate prolia anymore so that would be what I would do if I was in your shoes.

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Me_oww
Me_oww
in reply to Kaarina

Hello, I thought I replied to you earlier but now am not sure, still getting the hang of this forum. I've seen your name several times when reading posts. Thank you for your interest and for your suggestions. It is not easy to accept that I need to add poison to poison to maintain but I'm getting there. Just hoping to gather as much information as I can. Wishing you all the best!

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Seacrab
Seacrab
in reply to Kaarina

thank you, my instincts tell me the same.

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purpleraindlk

Hi, I have not taken prolia but have done a lot of research/reading on it and made the decision not to take. I do have a friend who was on prolia for 5 yrs. I don't know yet if she has had any problems after stopping it. If I find out I will share info. I'm curious what your side effects are/were?? Thanks!

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angryandfrustrated

I developed Osteonecrosis of the Jaw from the Prolia after a tooth cracked and needed to be extracted. The extraction was in June and it is still being monitored because it is not totally heeled. This is casing me to delay my needed hip replacement for fear of infection, plus an increased risk of fracture in the femur from stopping Prolia.

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Me_oww

Anything you can find out and pass along from your friend would be much appreciated. As to side effects I'm having: pain in both shoulder and my neck, difficulty walking. Was making good recovery progress after breaking left hip in 2015 but gradually started back sliding after going on Prolia. Fungal rashes that have popped up and are difficult to get under control. I'm glad that you have not taken Prolia! Best wishes!

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purpleraindlk

OMG, awful. How did you break hip, did you fall? I'm worried about my hips which are -3.2. Spine is a bit better. My mom had broken femur from years on Fosamax. Not good at age 83........... I have degen in neck discs, arthritis pain and very ouchy feet from arthritis and a prev. spontaneous foot frac. I think prolia might exacerbate my existing pains! I've read about the horrid skin issues............... HOW can they keep pushing that drug?? And say "should be no side effects"????? I have 2 neighbors who just started it, and I will be very interested to see how they do. They sort of don't appreciate my input about it and are hoping for the best.

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Me_oww

Thanks for writing. In answer to how I broke my hip--I was standing with my feet together in the street talking to a neighbor, started to take a step but something sticky in the street caused my foot to misstep slightly and I fell over like a cut down tree onto my left side. My doctor said anyone over the age of 50 falling like I did would have most likely broken their hip or worse. Lesson here is never stand with your two feet aligned close together because if you lose your balance you have little or no way of moving to catch yourself and keep from falling. Apparently, enough money is being made off of Prolia that they do not care about the rebound effects. Perhaps when there is enough of an outcry and/or lawsuits they will change their tune. All best wishes in the New Year of 2019.

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purpleraindlk

Thanks for the explanation...........what a freak happening for you! I am going to keep that in mind about not standing with feet together.......... I try to be very careful how I walk, stand, step off curbs, etc. I am curious if people ever have spontaneous hip fracs (like the spontaneous femur breaks) , or does it most always take an impact/fall............ would think recovery would be a major ordeal from a hip frac. I'm doing exercises for hips hoping that might help get them stronger. Happy New Year!

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Seacrab

My side affects include severe hip joint pain (limiting movement, including walking and climbing stairs); aching limbs; heart palpitations; anxiety, insomnia.

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Me_oww

Thank you for your comments and suggestions. Warm regards!

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purpleraindlk

Me again............. I also talked with a nurse at Amgen, asking about the rebound fracs..........she was VERY vague and it was like she didn't want to admit it happens, but basically she did and read stuff from their website about it. Don't know if my last reply got to you re: Forteo............ I would try that . You might have gains with it, many people do. Ask Dr . for Lily discount card if it still exists.

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Me_oww

Thank you for your input regarding Forteo.

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badprolia

Yes, I called Amgen regarding my many side effects also. I spoke with a Pharmacist and she told me all about the testing that Amgen did prior to the approval from the FDA. She was no help on offering me any other information. I am also mad as hell that this drug got past the FDA.

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Me_oww
Me_oww
in reply to badprolia

Thanks for writing and sharing your experience with Amgen. Yes, color me mad as hell too for all the good it is doing at the moment. I'm trying to take that anger and turn it into something positive. It is heart breaking to read what this drug with its rebound effect is doing to so many. And yet it is good that this is coming out and that so many support groups are being created. It is wonderful the way folks are sharing and trying to help each other.

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Seacrab
Seacrab
in reply to Me_oww

I complained to the FDA. I think a class action lawsuit is in order... is anyone a lawyer?

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Viazoy
Viazoy
in reply to badprolia

I called Amgen too after my Prolia related fractures. I wanted to know if they had a protocol to help me get OFF Prolia safely. All they told me was to ask my doctor. I actually called a few times (800-772-6436) and spoke to different people on duty (generally nurses) hoping that one or another would have some advice but the answer was always the same. And the only advice my doctor had was switching to Recast which has some scary problems of its own. I also asked the people at Amgen why they did not have the word "delay" in their warnings for patients, as well as the word "stopping." (My fractures were the result of a short delay; I had not intended to stop Prolia at the time, but there was a delay because of a change in medical personnel at the center where I received this drug) . Amgen responded by having their LAWYER call me to tell me not to call Amgen any more and to call her instead! I asked if she was qualified to give medical advice and since she said she wasn't, so I still call Amgen every few weeks to a) tell them how I'm getting along and b) to warn them not to use this drug or let anyone in their family use it either! It's something useful I can do while I'm lying down trying to get a little relief from the constant pain.

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Jayge
Jayge
in reply to Viazoy

How short as the delay? An oral surgeon told me he successfully did an implant by having patient doing the work at the fourth month from the last injection of a Prolia and then starting up the s Prolia again at usual time.

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Seacrab
Seacrab
in reply to Viazoy

Oh no! I am due literally this month, cannot bear to take another injection, terrified not to.

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jccros
jccros
in reply to Seacrab

Same here

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k_J53

Hi I’m similar to you I want to stop due to severe pain etc . I’m making an apt with the consultant who prescribed it over a year ago and request a different medication.or see what my options are my GP is not interested in helpu

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Me_oww
Me_oww
in reply to k_J53

Thanks for writing, good luck!

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Seacrab
Seacrab
in reply to k_J53

keep in touch please

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Viazoy

I was on Prolia for about 6 years when because of a change of medical personnel my shot was delayed. About a month after it was due I had terrible back pain and an MRI confirmed three new vertebral compression fractures. This was ten months ago and my life has been turned upside down ever since. Even though the fractures are healing the pain persists. My dentist is concerned about doing some routine dental work. My ability to lead a normal life is sharply limited because standing or sitting for more than an hour or two are very painful. This rules out some travel I was looking forward to. I used to be in generally good health and quite active. All that is gone. Neither the doctors nor Prolia's manufacturer warn patients of the danger of even a short delay. They warn against "stopping Prolia" but I never intended to stop Prolia and it was my doctors who occasioned the delay. Neither Amgen nor my doctors can offer a rehabilitation plan. I was left totally on my own for that. Please -- if you are reading this and thinking about Prolia -- THINK TWICE! Prolia was the biggest mistake of my life and I would hate to see others "trapped in the Prolia prison" as I am today!

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Me_oww
Me_oww
in reply to Viazoy

I am terribly sorry for what is happening to you. Unfortunately, because of the advice of two trusted doctors as well as the three previous doctors I've seen since 2010 that all promoted Prolia I finally went that route and about 4 months ago had my fourth injection. I had no idea of the rebound effect and originally thought that I'd just do it for two years, then stop and go forward with a specialized exercise program to build bone density. Recently, when I was exploring an exit plan on the internet that I could present and discuss with my Primary Care doctor I discovered all the new information regarding the rebound effect. When I went in recently to discuss all this with my Primary Care doctor he side stepped every question I had and what he finally told me was that it was fine if I stopped Prolia and I could always start it up later. Although, he did think that taking Fosamax was a good idea if I was going to stop the Prolia. I am so disgusted and disappointed in those whom we have given our trust to look out for us. It appears that all of us that got suckered into doing Prolia are being left hanging in the wind and all the while Amgen is laughing all the way to the bank. Right now I'm searching for a way out of this without doing another drug if possible.

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purpleraindlk

I sure agree................disgusted and disappointed with traditional Drs. I was never one to go to a naturopath or holistic practitioner, but when I did, I found he seemed to be truly interested in my issues and coming up with ideas to help. I'm getting more interested in this type of healthcare. He suggested the Rx supplement (fosteumPlus) for my bones long before I decided to use it after the forteo. And he also helped my painful foot (previous frac and arthritis) a lot with cold laser treatments. I am starting to think there are ways other than traditional medicine. I used to correspond with a medical transcriptionist who kept track (for her own knowledge) of "success stories" of women on the usual osteo drugs................ she said she saw VERY few success stories.

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HeronNS
HeronNS
in reply to Me_oww

Unfortunately it seems the best we know at the moment is to take another bone med for a few months at least after discontinuing Prolia. But I certainly agree that you should follow the advice of those who suggest more natural treatments as well. That will give you a better basis on which to proceed if you are eventually able to safely discontinue all the OP drugs. Please let us know how you get on. Best wishes.

ncbi.nlm.nih.gov/pubmed/287...

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Viazoy
Viazoy
in reply to Me_oww

I don't think there is a way off Prolia without switching to another drug. I've been looking into this for months. What there MIGHT be (and honestly I'm not sure - I'm still trying to learn about this and would like to hear the experience of others) is whether it would be possible to switch to another drug like a bisphosphonate for a SHORT TERM and then "wean" off of it. My understanding is that as a monoclonal antibody, Prolia works in a sort of "all or nothing" way. That if you go OFF it you lose your gains with it (and more) very fast. What I'm trying to figure out is if you can get off Prolia by overlapping with a bisphosphonate and then get off the bisphosphonate safely.

On thing recommended to me by a doctor was a short course of Reclast (which is an injected bisphosphonate that scares me -- but a few rounds of this might let me safely get off drugs. I just have not found out enough yet to risk it. I'd like to hear from anyone with experience with Reclast and/or using Reclast to get off Prolia.

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jccros
jccros
in reply to Me_oww

Lmk if u find one

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purpleraindlk

This is terrible. The fracture possibility from stopping is bad enough; fracturing after a delay is just unbelievable. I'm a believer that it is not a good idea to screw around with one's natural bone remodeling, even if that remodeling is not happening at the pace it should due to our age or other reasons. I am really wondering if my friend who just stopped prolia after 6 years is going to have issues............ we don't talk too often so not sure when I might get an update. She's in her 80s and did not have any side effects, luckily.

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Fracturegirl
Fracturegirl
in reply to Viazoy

I’ve had seven vertebrae fractures in the last 18 months since stopping the Prolia injections. This has totally wrecked my quality of life. Before all of this I was very active and walked a mile through my neighborhood three days a week. I worked in my garden and took my granddaughter to New York and walked miles every day that we were there. Now I am in bad pain if I’m on my feet for more than 15-20 minutes. Going to the grocery is very difficult and I have to lay down flat when I get home to make the back pain stop. I sure hope they take a Prolia off of the market and sure would like to see a class action lawsuit here in the US.

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Seacrab

i am praying for you and all of the women who were carelessly prescribed to have these injections, of which I am one.

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foxysharon

Hi what were your dexa scores when you started on prolia?

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Jayge
Jayge
in reply to Viazoy

Before Prolia, what readings did you have in your density tests.

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DebDenise

I am a 63 year old woman who has experienced a bad side effect due to taking Prolia for osteoporosis. I had my second injection June 1st 2018 and a few months after noticed my right leg was hurting. My back & joints had also been aching. I went to my nurse practitioner in September 2018 & asked her if it could be a side effect due to Prolia. She felt it was not a side effect and stated I must have banged my leg which I didn’t recall doing, she told me if it was still hurting in a month then to come back. I was still experiencing discomfort but I knew my appointment with the osteoporosis clinic was coming up November 14th, 2018 so thought I would speak to them about it. In the mean time I did extensive research on Prolia through a web site called my Osteoteam. I was alarmed to find out the number of women who experienced a femur break, pelvic fractures and spinal compression fractures due to Prolia and even Actonel which I was on for several years as well previous to Prolia. I noticed some commented after their second injection they experienced a fracture.

I went to my osteoporosis clinic appointment determined to get off this drug. The osteoporosis team were very concerned however still encouraging about this drug stating that what I read was true about rebound fractures but it only happens to 1% which I truly feel is probably higher & a nurse in recovery at the hospital expressed that concern with me. (interesting how the Prolia pamphlet states .01%)

After being sent for at least 4 xrays I unfortunately was now one of the 1% to suffer from an atypical femur fracture to my right leg. My life was just turned upside down. I was fortunate that they moved quickly with an MRI and an appointment with the orthopaedic surgeon & was scheduled for surgery November 28th, 2018. A rod was put in my leg from my hip to thigh to stabilize my leg. I am now struggling financially as I work part time at a an optometrist clinic with no benefits and I am also self employed cleaning an office which of course I am unable to do at this time.

I feel this drug needs to be investigated further as its devastating to find out that a drug that was suppose to help my bones has caused a fracture instead. They may feel it’s only 1% however when you come to be that 1% it is a big deal...

The scary part is knowing I can continue to have more fractures.

I will never encourage anyone to go on this drug or any osteoporosis drugs for that matter. I just pray I get most of my life back. I was a very active person at one time.

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purpleraindlk

Yeah if you're the 1% - not good. I really feel for you. I had a hairline foot frac (unexplained) and the loss of mobility and how it turned my life upside down for over 2 years was totally devastating to me. I too had been very active. I still cannot be super active and have limitations, but just so glad to be on my feet and walking now. I live in fear of other fractures ...............

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DebDenise

Hi purpleraindlk

I hope your health continues to improve. I am trying my best to work out and making further changes with my nutrition.

I plan on returning to work in a couple weeks however I still feel anxious about experiencing further rebound fractures. The osteoporosis clinic did not want to put me on Bisphosphonates when I stopped taking Prolia. They seem to feel Actonel played a role in my femur fracture as well.

It makes me feel very helpless when they didn’t have a safe exit plan for me...

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Me_oww
Me_oww
in reply to DebDenise

Thank you for sharing your experience. I wish you the best in trying to find your way through what is happening to your former good health. It would certainly be most helpful if Amgen would acknowledge what is going on with the rebound effect and develop a protocol for folks that need to stop. I know how I want to go forward from here in a natural weight lifting exercise program but obviously to do so I need to stop Prolia without getting fracture(s) either before or after I stop. Continuing is not an option because of the side effects I'm experiencing. Best wishes in the New Year 2019.

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DebDenise
DebDenise
in reply to Me_oww

I also called Amgen & told them I wanted my experience documented. I told them I don’t feel their percentages are accurate because they told me it was 0.1%

I truly feel it’s higher & I hope that doctors are reporting their patients bad side effects.

My family doctor says he still thinks it’s a great drug & that I just have very bad luck ☹️

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pteyze
pteyze
in reply to Me_oww

I too am planning to go off prolia in march, so wish I had never gone for the first shot. Am hoping I get back to feeling as I did before my first shot

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antiP2219
antiP2219
in reply to pteyze

I only had one shot, too, last April. No more! And am still suffering bone and joint pain, lower back pain, muscle spasms, and more. However, risk of spontaneous fracture after only 1 shot is negligible. Stopping after two or more shots puts you at risk. I just hope that someday these after-Prolia side-effects stop!

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Siamang
Siamang
in reply to antiP2219

I pray you are right about stopping after 1 shot. Apart from muscle fatigue most of my aches and pains I had prior to prolia needle. However, reading all the nightmare experiences many have had my heart goes out to each and everyone of you. Now into 5th month post needle and my body is starting to feel less fatigued. Hoping injection is getting out of system as no more. Risk not worth it! Still nervous as to what may linger on after the 1 and only shot!?

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Seacrab
Seacrab
in reply to DebDenise

This is heart wrenching. I wish you well and let's keep our eyes peeled for an antidote (and a class action lawsuit!!)

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HeronNS
HeronNS
in reply to Seacrab

I think the class action lawsuits may soon be on their way in at least some countries: pritzkerlaw.com/recall/medi...

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yaelsmith

My endocrinologist told me there is a rebound effect and one has to transition to another medication for 6 months to deal with this. I stopped 2 years ago after 2 Prolia shots and sustained a vertebrae fracture so there is truth in this. Your doctor seems to be misinformed.

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Meganisi
Meganisi
in reply to yaelsmith

How long after your last injection did you sustain a vertebrae fracture? I have just stopped Prolia and transitioned to Actonel - initially for a year - but your bone loss can last up to 2 years so I am keen to continue with the bisphosphonate for as long as it takes.

I am wondering what a compression fracture feels like though? Through my own fault I fear I may have sustained one. Does the pain radiate out from the spine or is there pain everywhere? I have not yet had a CT scan. X-ray not high res enough I was told. Any sharing appreciated. Worried.

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DebDenise
DebDenise
in reply to yaelsmith

The osteoporosis clinic did not want to put me on Bisphosphonates after stopping Prolia. I was on Actonel for several years before Prolia. They were not sure if Actonel also played a role in my femur fracture so they had no safe exit plan for me.

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Elizabeth65

I got 2 fractures within 10 weeks of not renewing Prolia in the L! and L2 vertebrae. One should go on some bisphosomate like Fosamax or Protelis powders but my consultant and GP never mentioned a Rebound Effect with Prolia and I had to come off it for 6 mths to get lower jaw tooth out. Doctors and Dentists differ and patients suffer FRACTURES.

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Elizabeth65

I think that medical profession are NOT REPORTING FRACTURES for those withdrawing from Prolia and no one is monitoring the profession. They just send you from one expensive specialist to another to deal with fractures. A RED WARNING should be on the Prolia Box stating....DO NOT STOP TAKING THIS PROLIA INJECTION AS YOU WILL LOOSE ALL THE BONE AND MORE THAT YOU HAVE BEEN BUILDING UP FOR YEARS AND WILL GET FRACTURES DUE TO REBOUND EFFECT!

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Viazoy

I reported this to the U. S. Food and Drug Administration (FDA). And my doc did as well -- I agree with you about the needed warning!!! They do not even use the word "delay" -- It's true that doctors should understand the word "delay" to be a kind of "stopping" but most lay people don't, and if they are LATE for their shot (for any reason) they could be at risk for fractures. This and other warnings are not, in my opinion, adequately emphasized for patients in the warnings for Prolia.

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Viazoy

If you possibly can please do not delay your Prolia shot without reading some of the posts below about resulting fractures, and/or having a really good exit plan! In my case a delay of just a few WEEKS (because of a change in doctors at the clinic where I received Prolia resulted in vertebral compression fractures that have basically destroyed my active life. I have called Prolia's manufacturer Amgen asking when they will warn against DELAY (using that word) in their literature for doctors and patients. I have also asked them for rehabilitation advice but the have nothing to offer but "ask your doctor" who has offered no practical solutions.

I have reached out to Amgen at 800-772-6436 to let them know what happened, to ask them to PLEASE include the word DELAY in their warnings for patients, and to seek advice about rehabilitation. So far it does not seem they are about to warn about "delay" nor have they anything to offer about rehabilitation. I have also asked them how to get OFF Prolia safely but they have nothing to offer there either. However I continue to call Amgen them regularly at 800-772-6436 to let them know how I'm doing and to suggest once again that they need to update their warnings to include the word DELAY! Perhaps something will click with them and it's the least I can do that could help others.

I found a physical therapist on my own who has helped, and and massage therapy has eased the painful muscle cramping around the fracture sites. These have helped with pain to a small degree. But I have had to cancel travel plans and other activities involving standing or sitting up for more than short periods of time because of the pain, and this in turn has left me in weakened condition. I can no longer engage in the active life I enjoyed before Prolia ruined it, and the worst part is that there is no way I can find to get OFF this drug safely without breaking more bones even though I'm having difficulties because of it now.

I wish healing to all here who have suffered because of this drug.

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shocked-disgusted

I am in shock....My wife has been on Prolia for 5 years and she was just going to stop on her own....She has not had any side effects, but now thinking about the two teeth that were pulled.

The bone density has only had a minor improvements, so I am wondering if there is any thought on the rebound occurring if the levels have not improved that much.?

She can't tolerate calcium, so doesn't take any, so I am wondering how this fits in...?

Also, wondering about using Forteo to get off Prolia....I guess it works differently but I am sure there are side effects as well?

My wife got colitis from Actonel , so we should have know better on taking another drug.....They are all poison....

thx

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Happines

I so hoped someone would answer your inquiry about successfully going off Prolia. I did stop it after breaking my femur. Surgeon said it was atypical break from all these “bone-building “ meds. I had been suffering from thigh pain for over a year before the break. After stopping it I found the info about rebound fractures. So scary. I feel like I’m just waiting for a fracture. Drs really encourages going on another med. for at least a year. I have declined since it was a dr. who originally put me on Prolia. I’v decided they don’t know everything.

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Me_oww

Hi Happiness: This isn't the only site I've asked that question on. So far not much in the way of answers to my question have been forthcoming. Thank you for actually addressing my question. My 5th shot was due March 5th 2019 and I did not take it. Each 5th of the month I count one month down so as of today I am 7 months out. I have had no fractures that I am aware of at least. However, I have not been right since shortly after my 2nd shot when my shoulder joint areas started acting up. The left one has gradually became the worst with no improvement even after stopping Prolia. It is like I had a rotary cuff injury or my joint is out of place but neither is the case. I have quite a lot of pain especially at night as I am a side sleeper. I would not have gone forth after the 2nd shot but my doctor said that my shoulder problems were not a side effect related to Prolia. They weren't too bad at that time so I foolishly believed him and went forth. By the fourth shot I realized that my trust in my doctors (three of them over the years recommended Prolia) was misplaced. They are brain washed by the pharmaceutical industry. It is very frustrating to have no medical doctor I can get information from about what is happening with my shoulders or Prolia and the rebound effect. I hope is that eventually my shoulders will return to normal and that I will not have any rebound fractures.

You are probably aware that it is best to not just sit around and hope for the best. I am taking highly recommended supplements. I've been searching for an intensive weight bearing exercise protocol that I can do. I am limited some because of my left shoulder. Two good sites for information are Susan Brown's Better Bones and the other is an osteoporosis group on Facebook for natural remedies. Here is the link for Susan Brown: betterbones.com/ and here is the name of the Facebook group: Osteoporosis Natural Remedies - there is a gentleman who posts a lot of good information regarding supplements and diet for osteoporosis, his name is Douglas Johnson. There is a lot of sharing on that site from members and a lot of good information available. If you haven't done so already I suggest doing a lot of research and figure out how you can help yourself.

Someday I hope to post here a good answer to my own question based on my own experiences. I hate seeing so many people stay on the detestable bone meds and Prolia in particular because they are scared. I'm glad I stopped after 4 shots and am doing what I can and hoping for a good outcome.

Thanks for writing and Good Luck to you, Ann

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