I am new here. I have been taking Prolia for almost 10 years. I did not know the ramifications of it when I started. From what I read you should not be taking it this long and when you stop the incidence of fractures increases greatly. Has anyone stopped Prolia and were there any problems?
Copper23
I’m about to take my fourth shot of Prolia. I haven’t had any problems. I’m curious if your scores have improved over the last 10 years? I should have another bone scan in June of this year so I’m curious to see the results.
Yes, my scores improved and I really had no side effects. However, I am now concerned about how to stop Prolia without breaking my bones. Also do they lower you immune system. How much - I don't know???I have bacteria growing in my lungs and it is in the back of my mind that this Prolia affected my immune system. No one told me that but I just wonder. Copper 23
You mustn't stop Prolia without using a relay bisphosphonate to prevent potential rebound fractures. There are some terrible stories on this and other sites of people who stopped for various reasons without following Prolia with a bisphosphonate and suffered multiple vertebral fractures in a very short space of time and very shortly after their missed injection.
I decided not to continue with Prolia after 2 years (4 injections) due to the intolerable side effects. I have been on Actonel (risedronate) for the past 10 months and so far, so good. The problem now is when to safely stop the Actonel. I am going to consult an endocrinologist in March who has experience in managing patients off Prolia and the relay drug.
Thank you for your response. At least I see some hope in going off the Prolia. These drugs are great but what happens when you can no longer take them. I started treatment for this at the age of 58 and here I am 14 years later. Those years went fast. I would really think twice about going on them again. Copper23
Yes, these osteoporosis drugs appear to produce great results, but Prolia came with its own set of issues which didn't become apparent until several years after the clinical trials had ceased and it was on the market. It was only in 2017 that it became apparent that some people were experiencing multiple vertebral fractures after stopping Prolia. Many people stopped because their doctors told them they could have a "drug holiday" as their bone density had improved significantly. Others just missed their scheduled injections for whatever reason. They are now living with the consequences. I think the rate of fracturing is about 10- 15% so there's a good chance that you might not, but it's a risk I wasn't willing to take, hence the relay bisphosphonate.
I'm following a protocol devised by Prof. Olivier Lamy to get off Prolia safely. You might like to read it and show it to your doctor/specialist: researchgate.net/publicatio... You can download the PDF for free by clicking on the link.
I don't know how long one can take Prolia safely. I've read 10 years, but there are just so many unknowns with this drug. I regret ever having started it as it's now a long and tortuous path to get off it. Apart from the immediate side effects which you don't appear to have experienced, there is the risk of osteonecrosis of the jaw and atypical femoral fractures. Dentists will ask you to have any invasive work on your teeth (extractions, implants, etc) done a week or two before your next scheduled injection (so when Prolia is weakest in your system) so as to avoid triggering ONJ. That's if they know what they're doing. If they don't, they apparently ask their patients to postpone their next injection so that they can do the dental work then. That is highly risky as people have started fracturing 3 weeks after their missed injection. Bisphosphonates are even worse - they remain in the body for up to 10 years. My dentist has warned me that he won't do any invasive dental work if I take Actonel for longer than a year, so I'm between a rock and a hard place as I have to keep going for 18 months at least. Hopefully the endocrinologist will be able to monitor and manage my stopping Actonel at the right time. I am desperate to get off these drugs.
I believe from what I have read online that Prolia does affect the immune system although I seems to remember that Amgen denies this. I had some tests done by a rheumatologist - first ever - after 2 years on Prolia and my IgG1, 2 and 3 (immune) levels are below the low end of the scale. Not sure if taking Prolia caused that but, if they were low to start with, I shouldn't have been put onto Prolia. No-one tested at the time.
Good call to consult an endocrinologist. Prolia is a powerful medicine, and it does present some issues that a specialist is best equipped to help you with. It is meant to be a long-term solution whereas some other newer osteoporosis medicines are only meant to be taken for two years.
It's been really difficult to find an endocrinologist knowlegeable about managing patients off the relay drug post-Prolia. They know to put you ON to a relay drug, but not how and when you can stop, so recommend you just continue the bisphosphonate indefinitely. Fortunately a contact from this site is further down this path of getting off these drugs altogether than I am and I will be consulting her endocrinologist who has obviously managed patients off the bisphosphonate before. Unfortunately she is on the other side of the country, in another state, so the consult will have to be telehealth instead of face to face.
Please let me know the physician. The response I get from my PCP and rheumatologist is just stay on it the rest of your life. I really want to get off of it. I am small in stature, small boned, never had a fracture, and screenings indicated that I did not have osteoporosis but my dexa scan did. I have always been active and exercised. Thank you for your response.
Copper 23
I'm in Australia and it looks like you're in the USA so you'll need to find a sympathetic and proactive endocrinologist closer to home. I was in touch with someone on this site several months ago who lives in California and was also working her way off Prolia using a bisphosphonate (Fosamax). Her endocrinologist is at Stanford. I'm sure that if you contacted her she would be willing to give you the endo's name and contact details. That might work for you if the endo will do telehealth appointments if you aren't in the area (the US is a huge country!). Here is the link to a very long series of posts healthunlocked.com/boneheal... but you will find her there - msw67. You can ask her about her endo in response to one of her posts.
msw67 actually made me aware of Prof Lamy's protocol for getting off Prolia as she and her endo are using it as a guide. Table 3 in the article to which I sent you the link previously is the one to use. I have been using it myself as I haven't been able to find an endocrinologist to help me until now (appointment in March). If you read the posts by msw67, you will see that the important thing is to test CTx (bone turnover marker) frequently. My GP (who by her own admission doesn't know how to manage me off Prolia and the subsequent relay bisphosphonate) has been very supportive and has just let me run with it. I go to her to request a script for the CTx blood test every 2-3 months and she is happy to write one out. My last one was 400, so below the upper limit of the premenopausal normal range (800) Prof. Lamy specifies. So all OK so far.
When you stop Prolia, your bone turnover as measured by the CTx will increase as the Prolia wears off. Monitoring the increase by testing is to make sure it doesn't go up too rapidly which means you may run the risk of vertebral fractures. If it does increase too rapidly, Prof Lamy recommends Plan B, an intravenous infusion of zolendronic acid. Hopefully it doesn't come to that as the intra-venous drugs are very heavy duty bisphosphonates and I understand are even more likely to predispose one to ONJ. Regardless, all this is something that an endocrinologist should be managing as they obviously have the expertise in interpreting bone turnover results. I was trying to do this all myself but my blood test in November indicated high urinary calcium. My GP didn't know what this meant. Realising I was getting out of my depth in all of this, I made an appointment with the only endocrinologist I've heard of in Australia who knows about getting off Prolia safely to interpret this aberration. I feel relieved that someone else will soon be managing this instead of me doing it.
The other thing I understand about stopping Prolia is that within a year your bone density will revert to what it was pre-Prolia. I have yet to see if that is so in my case. My next DEXA scan is in early March. I had good gains over the two years but it doesn't really bother me to lose these - if I also lose these drugs! I intend to start taking strontium citrate instead as I had really good results when I took it for 3 years shortly after being disagnosed with osteoporosis. Several others on this site have reported similar bone denisty increases on strontium citrate but, of course, because it isn't able to be patented, medical professionals won't recommend it. It's a naturally-occuring supplement.
I hope I'm not speaking out of turn here, but I'm questioning why you're on Prolia in the first place as you've never had a fracture. It's not, to my understanding, meant to be a drug of first resort. Were you on another drug prior to Prolia? It would appear so, as you say you started treatment 14 years ago for osteoporosis, yet you've been on Prolia for 10 years. Were you unable to continue with the earlier drug for some reason? I have osteoporosis but haven't had a fragility fracture but did break my left tibial plateau in an accident which prompted my being put onto Prolia. That should never have happened. I was not told at the time that you have to take this drug for life. From what I've read, Prolia should only be given to people unable to tolerate other drugs, like bisphosphonates. That begs the question of what to do if one can't tolerate Prolia as the usual relay drug is a bisphosphonate!
Thank you for taking the time to respond. I will certainly look at the references you provided. I was diagnosed with Osteoporosis when I was 59 - two of my results were the osteopenia and one was the osteoporosis. I had some back pain and my PCP told me I needed a dexa scan. I went to a rheumatologist and he started me on Fosomax. After two years he did another scan and said that it wasn't working and then put me on reclast. I did one treatment successfully but when I went for the second treatment the IV staff could not find a vein easily and continued to poke me many times. I finally told them I was discontinuing the treatment as this was just too painful. The doctor came into the IV room and said that I should try Prolia and I trusted him so I did. I took it for years and had no side effects and the doctor said my density had improved and the scan no longer showed osteoporosis. Ironically I never had a fracture and my bone density screening did not indicate osteoporosis. I am small boned and very petite. At that time my height had not changed. As of now I probably lost an inch in height. I have always been very active going to the gym at 5:30 AM prior to work doing aerobic exercises and also lifting weights. At that time I skied, biked, swam, hiked the mountains did aerobic classes,. I wonder if I really had osteoporosis as I have since read that the dexa scan is not that accurate for small boned petite women as it over diagnoses women of small stature and under diagnoses those of tall women. This makes sense to me. Unfortunately 10 years later I am between a rock and hard place with the Prolia. It does make sense to me to monitor the bone loss and do something as this happens. Again thank you so much for the information. I live in Pennsylvania which is on the opposite side of the country from California. I will try to do some research on finding an endocrinologist.
Carol ( copper23)
Hi Carol - Reclast is zoledronic acid, a very strong bisphosphonate. There must have been a very good reason for you to go down that path early on, so one presumes that you must have had osteoporosis at the time. However, in my understanding, one doesn't start on the IV drugs, so all a bit odd. As a matter of interest, do you have your original DEXA scan results? The osteopenia range is from -1 to -2-5, and osteoporosis is from -2.5 and below. By looking at your results in relation to those ranges, you can see if you actually had osteoporosis in the first place, and also where you are now after your 14 years of treatment. It's always good to be informed as sometimes we have to advocate for our own health. Medical professionals, in my experience, tend to hand out drugs far more readily than they should. When I was put onto Prolia, my spine was -2.3, my femoral neck was -3.4 and my total hip was -3.1, so definitely osteoporotic. However, I had never had a fragility fracture, so being prescribed Prolia at that stage was questionable.
The good thing about having taken a bisphosphonate prior to Prolia is that they say in the medical literature that doing so is meant to give you a degree of protection against the potential for multiple vertebral rebound fractures if/when you stop Prolia. So that is a positive if you do decide to stop.
Like you, I am also small boned, slim and very active, exercising regularly. I think a healthy, active lifestyle and taking appropriate supplements like vitamins D3 and K2, boron, magnesium and calcium will go a long way to building up one's bones (and I intend to add strontium citrate to the mix once I'm off the Actonel). From what I've read, it's not only about bone density as measured by the DEXA, but also bone quality. There's a very good book you might like to read called "Your Bones" by Lara Pizzorno. She goes into a lot of detail about bone health and maintaining it, the osteoporosis drugs and their alternatives.
There is an online tool called the FRAX test which will give you your estimated risk of fracturing over a 10-year period: sheffield.ac.uk/FRAX/ Mine was 17% which brought a concerned look to my GP's face but, when I told her that conversely I have an 83% chance of NOT fracturing, she realised that 17% is not all that high!
Good luck in finding an endocrinologist able to manage you off Prolia!
Vicki
Thank you for responding. I don't remember my exact numbers from the original scan but I believe only one was below -2.5 and the others were a little less.. I feel that the doctor was too quick to prescribe the Prolia and I did not know about the difficulty with going off of it. I am certain that he did not explain that to me. I would like to know my risk for going off of the Prolia for fractures. As you said if it's 20% then it's 80% you won't have one. I also have acid reflux so I am not sure how taking Fosomax or something similar would work. I also have a lung disease which at this time is not problematic but could become worse as well as high blood pressure which I am treated for. I often think that taking all this medication is going to cause me a premature death. I would like to stop it all because I am able to be active and basically do not have pain that stops me from doing what I want to do. I do appreciate your listening and responding.
Carol (copper23)
Hi Carol
The FRAX test measures your overall risk of fracturing based on your DEXA results (so bone density) irrespective of whether you are on osteoporosis drugs or not. The risk of fracturing after stopping Prolia is completely different - and is the big unknown - but seemingly occurs in 10-15% of people who were on Prolia. They don't know why some people have multiple vertebral fractures and others don't, but it appears to be related to how quickly the bones lose density post-Prolia. That's why you have to have frequent CTx (bone turnover) tests to monitor what's happening.
Your doctor who prescribed Prolia back in 2010 didn’t know that you can't easily and safely stop it. The medical profession only realised in 2016/17 that this was a major problem after a significant number of people around the world started breaking their vertebrae after stopping Prolia. I wasn't warned either when starting Prolia in March 2018. When I queried the doctor about this two years later, she said that they knew about the issue in 2018, but didn't accept it, so didn't inform patients. I wasn't happy about that, but what's done is done.
You don't have to take Fosamax. I'm on weekly Actonel (risedronate) EC which is enteric coated, so less likely to cause reflux or other digestive problems. The other option is another annual infusion of Reclast which you know from previous experience that you can tolerate.
Finding a good, sympathetic, knowledgeable endocrinologist is key.
Vicki
Thank you so much for your response. I was at the point that I had given up hope of successfully getting off the Prolia but with everyone's response I see that there are options. Carol Copper 23
Hi Carol,
I totally understand how you feel as for years, I just went along with the doctors unless something jumped out at me. Now I research and ask questions before allowing anything major as these drugs are. I also use Drugs.com to see side effects and interactions.
Of course there are options. The simplest is to say no.
My osteo endocrinologist began " selling and pushing" a new drug called Romosozumab two years ago after a 3 year break from ReClast. His plan was a year of this drug and 3 to follow with ReClast, which I have had success with.
I was not pleased that he was pushing when the drug had not been tried at the metro teaching hospital that he is associated with. Additionally, after being his patient for 8 years that he didn't check my family history of cardiac issues and stroke which are black box warning of the drug.
Being that I have a kidney disorder, which he over looked, I wanted a consult with my nephrologist before being given ReClast again- he did not.
I got a second opinion- ReClast.
When I spoke to my nephrologist, he suggested Prolia, which I am guessing his severe kidney patients might take. When I saw the side effects including fractures and possible pericardial infection; no thank you.
My nephrologist and PCP have agreed to let me take Dr.'s Best Bone Builder with Bone Olive in addition to my calcium, magnesium citrate with D3 until we can find doctor who listens.
If you are not comfortable, have a candid talk with the ordering doctor and see what options they suggest.
Please reach back and let me know how you make out.
Bet
I am fortunate that my rheumatologist is basically an endocrinologist wrapped inside too by his education and experience. Key was he is a practicing professor of the medical school at the University of South Florida in Tampa, FL. His name is Yih Lin, MD. Had Forteo for two years, now on my 3rd and last annual Reclast infusion. Tomorrow we will discuss what comes after the 3rd and last infusion in April. There will always be a maintenance med to maintain what the Forteo increased in my bone density WHERE I needed it. (Over all increase was 12%...maximum would have been 13%. So now I am making certain that daily injection of Forteo for two years ...well, am just showing a bit of respect and gratitude for having such a fine MD when I first needed him. I'll be bringing pizza for him and his staff as I fight past the rest of the medical folks in his building.)
Each Dexa is from the same "parent" tech wise, but each has its own "fingerprints". When comparing Dexas, if not from the same exact equipment, the readings may be comparing apples and prunes.
I am starting to become skeptical of these Dexas. I just had a telemedicine appointment with an orthopedic doctor who specializes in Osteoporosis. My PCP told me to get off Prolia. The Orthopedic Doc said that I should stay on prolia my entire life. She said that the research supports her decision. She also indicated that she has been on prolia herself now for 10 years. Has anyone else had a similar experience.
I am in Florida. My rheumatologist at the university medical school is Dr. Yih Lin. USF Health, University of South Florida, Tampa FL. Practices out of the Morsani Bldg on campus. Look him up on the internet and send him a letter. Drs. don't use emails, they use FAXes, and I do not know his. Perhaps he may be able to provide a name of MD of his caliber near you.
After my first Prolia shot (and I saw the cost!) I did more reading on the side effects, etc. At that point I told myself I can change my lifestyle or I can be on an expensive drug that has side effects that concern me. I was lucky because my OB/GYN listened to me, and was willing to go down the path I asked for. So, I discontinued getting Prolia, and for the last two years I have been diligent about my calcium and vitamin D intake, and exercising (weight bearing) five days/week. I had a dexascan done late last year and my bone density has improved. So the doctor said to just keep doing what I am doing for now. We will keep re-evaiuating over time, but she listened, and that saved me from the long term Prolia use.
I wish you luck in your journey. It looks like you have received a lot of good advice from people already.
Increase in blood pressure while taking prolia
Transitioning off Prolia with Reclast
cost of Forteo, Tymlos, Evenity, Prolia in USA
What do you do if you are getting a bad reaction to Prolia when its already in your system
How Often is a Five Year Course of Bisphosphonates Enough?
