1. < Osteoporosis & Bone Health

Support For Those Quitting Prolia

Posted by formisc @formisc, Feb 13 10:14pm

I wanted to start this Discussion as a support thread for those who have already decided to quit Prolia and are in the process of transitioning out of Prolia to share our knowledge, thoughts, decisions and experiences as i had difficulty finding such posts from the various other Prolia threads. Those who have already completed their transition from Prolia are most welcome to contribute their experience.

It would help if you could include some basic info such as TScores, BTMs if available, number of Prolia injections taken, what med you transitioned to, length of time on relay drug and any feedback on effectiveness/reaction to the relay drug.

To prevent overlap with other Discussions already on this forum, the reasons for quitting Prolia need not be raised and it will be assumed that you have already done your research and made your decision. It is hoped that this Discussion will focus more on any feedback/advice that can assist in the transitioning process i.e. not on the 'Why' (quit Prolia) but more on the 'How' (to manage the transition).

Maybe i can start.

Background:
My TScores from my 1st DXA scan in May 2022 were:
Lumbar Spine -1.3
Femoral Neck -2.7
Total Hip -3.0
Unfortunately, my PCP did not order any BTMs so i do not have any baseline numbers.

My 1st Prolia shot was in July 2022, 2nd in Jan 2023 and my 3rd in July 2023.

In Dec 2023 after 18 months on Prolia, i did my 2nd DXA and the results were:
Lumbar Spine -1.1
Femoral Neck -2.6

I decided to quit Prolia before the 4th shot and started on weekly Alendronate in Jan 2024. To date, i have taken 7 Alendronate tablets.

Feedback on Alendronate:
The relay drugs most often cited are Reclast (most frequent) and Alendronate. Alendronate is not recommended for those with esophagus issues as it can irritate and damage the digestive tract.

I decided on Alendronate instead of Reclast as i was wary of taking in a full 1 year's dose of meds in one go and also because i read that the timing of the Reclast infusion can be tricky and the wrong timing may necessitate additional infusions. With Alendronate being a smaller weekly dose, the timing is not really an issue provided there is no delay in starting it at the time the Prolia shot is due.

The 2 days after the first Alendronate tablet and also after the 3rd tablet, i had a bit of stomach pain which went away after i took Veragel. From the 4th week to the 7th week, i have had an achy feeling at the side of my left knee. More surprisingly, i had 3 episodes of tinnitus after my 6th tablet, something which i have not experienced for a long time.

All the above side-effects have been bearable so i will continue with the Alendronate. I pray for the side-effects to cease as i do not want to go on Reclast and i read that Actonel is not potent enough to mitigate the rebound effect.

I plan to do a BTM test in Mar 2024 and quarterly thereafter for the 1st year and a DXA at the end of the 1st year. Depending on the results, i may stop the Alendronate or perhaps go on half-dosage for another 6 months instead of stopping cold turkey. Will also do a BTM at 18 months and a BTM cum DXA at 24 months of Alendronate as the rebound window supposedly stretches over 30 months from the last Prolia shot.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

gravity3 | @gravity3 | Oct 2 3:07am
In reply to @windyshores "@bonana caan you explain the light phototherapy? Is that for your osteoarthritis? Again if you have..." + (show)
@windyshores

@bonana caan you explain the light phototherapy? Is that for your osteoarthritis?

Again if you have serious osteoporosis, I would have expected your endocrinologist to suggest a bone building drug like Forteo, Tymlos or Evenity. Is it possible to get a second opinion?

I try to remember that people with side effects are more likely to post. I have sensitivities to many meds but managed to do Tymlos by starting at a low dose and moving up. This titration helped mitigate side effects for me.

I know that Reclast has caused you a lot of pain. On the other hand, I have fractures and that pain and disability is permanent for me. So I tend to encourage trying meds to avoid fractures. If your DEXA is better than -3.0 or so, then providers like McCormick do suggest a natural approach first.

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Here is some support. I have had a full course of both for two and evenity with no discernable side effects and positive results with both.

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windyshores | @windyshores | Oct 2 7:15am
In reply to @gravity3 "Margaret Martin and the MelioGuide just sent an email about how to stop Prolia safely" + (show)
@gravity3

Margaret Martin and the MelioGuide just sent an email about how to stop Prolia safely

Jump to this post

@gravity3 I got that email too. Melio Guide has videos and articles that are so helpful.

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jheieck | @jheieck | 3 days ago
In reply to @formisc "Hi Michael, I must commend you on a very well-done presentation and a professional looking video!..." + (show)
@formisc

Hi Michael,
I must commend you on a very well-done presentation and a professional looking video! I really thought you were a doctor until i read your post above!

I found the section on stopping Prolia very helpful and encouraging. I was less thrilled on the part promoting the use of Prolia under different circumstances.

I didn't want to discuss the pros and cons of Prolia in this discussion thread which, as i stated earlier in my first post, was to cater for those who already decided to quit Prolia but feel i should at least say something to act as a balance to the "positives" mentioned in the presentation.

To me Prolia is like a never-ending tunnel. Once you start on it, it becomes progressively harder to get off it.

See below video by Cleveland Clinic:


Once on Prolia for 4+ years, there's no guarantee that any drug (including Reclast) will safely allow you to stop without the rebound effect and risk of multiple fractures.

In that case, someone will ask - why stop at all then if the drug works and the side-effects are manageable? To that, i can point out 3 things:

Firstly, there is safety data available for Prolia for only 10 years and most doctors would not advice staying on Prolia for longer than 10 years. So for someone in the 80s or 90s, it could be an option but consider too the next 2 points

Secondly, once on Prolia for around 5 years, there are significant risks of multiple vertebral fractures and osteonecrosis of the jaw and this risk increases the longer one is on Prolia. Prolia reduces bone absorption immensely and this slows down any bone healing after say, any invasive dental work. So staying on Prolia indefinitely brings on increasing risks

Thirdly, circumstances could lead to an unplanned cessation of Prolia, even if temporary, for example, stoppage of insurance coverage upon reaching a target or satisfactory TScore (in fact this was what happened in the past leading to multiple fractures) or as we all experienced, a Covid lockdown. If this sudden unplanned cessation happens after one has more than 1 injection, there will be the risk of rebound effect

As pointed out by some practitioners, there may be cases where Prolia is the best option - the one i have read is where there is a very high risk of impending fracture and a need to very quickly bring down this risk - but i believe these are limited

I have deliberately not bring up the topic of the efficacy of Prolia (and anti-resorptives in general) in improving bones as i did not want to stir up a hornet's nest but there are many who question if anti-resorptives merely add a layer over existing weak bones, hence improving bone density numbers without actually improving their quality

Above are just my views. Like you, i am not a doctor and i am only putting out the above as things that can be brought up and discussed with a PCP/specialist if necessary

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Hello, I stumbled upon this post because I am extremely interested in how to get off Prolia or transition to another drug, as everything I have been reading is pointing me to catch 22 situation, in which I cannot go off Prolia and I cannot safely stay on this drug. I never was advised prior to starting on Prolia about risks involving extensive dental work, and when I went on it 6 years ago I had 19 crowns, one bridge and three root canals, with possible extractions in my future. Yet I was put on Prolia, and it wasn't until about 2 years later that I realized the trouble I was in, as my bridge broke and I had to have it replaced. About a year ago the tooth that anchored the bridge broke completely, so I had to have an extraction and a bone graft. I worked with my bone health specialist to try to accurately time getting two implants installed, but two weeks after they were installed, the bone around one of the implants started to erode and I exhibited the beginning signs of ONJ, so my oral surgeon opted to remove both of them to be safe. I got caught in-between the recommendations of the oral surgeon and the bone house specialist, in terms of when it was safe to have the dental work done, and against my oral surgeons recommendations, I went ahead and had my my last Prolia shot in June and the dental work done in October. Since then I've
learned that I should have waited one more month (5 months out) at least before having the dental work done. I'm now back at square one waiting... I should preface all this information by explaining I don't have my T-scores, but I started at -3.0 at least, and have made some improvements. I'm in the negative 2s now. Also, I have never had one break in my life and I have fallen multiple times before and after starting Prolia... on my wrists, ankles, knees... all kinds of problems and never had a fracture. I also have severe osteoarthritis and I have been told that arthritis of the lower back can skew bone density test scores, so I wonder if my osteoporosis is as severe as test scores indicate. I also strongly believe that as a result of taking Prolia I have many side effects, including higher bad cholesterol, the beginnings of high blood pressure, incredibly painful lower back pain, and excruciating bone aches that are unexplainable. I desperately want off this medicine, but I don't know what to transition to and am basically afraid of all my options. Reclast is out because of the ONJ potential, and the bisphosphonate option, HRT, also sounds bad, in terms of side effects. I'm currently waiting to see an endocrinologist and a rheumatologist to sort through this dilemma and figure out the best options for transitioning off Prolia. I'm also due for my next Prolia shot the end of December, but I don't see any of these doctors until January/ February time frame. I'm not sure if I'm going to have to finish one more Prolia shot, but I need to find a way out of this rabbit hole so that I can get my dental work done and eventually get off Prolia for good. Besides, how many more years can I take it safely?

REPLY
1 reply
windyshores | @windyshores | 3 days ago
In reply to @jheieck "Hello, I stumbled upon this post because I am extremely interested in how to get off..." + (show)
@jheieck

Hello, I stumbled upon this post because I am extremely interested in how to get off Prolia or transition to another drug, as everything I have been reading is pointing me to catch 22 situation, in which I cannot go off Prolia and I cannot safely stay on this drug. I never was advised prior to starting on Prolia about risks involving extensive dental work, and when I went on it 6 years ago I had 19 crowns, one bridge and three root canals, with possible extractions in my future. Yet I was put on Prolia, and it wasn't until about 2 years later that I realized the trouble I was in, as my bridge broke and I had to have it replaced. About a year ago the tooth that anchored the bridge broke completely, so I had to have an extraction and a bone graft. I worked with my bone health specialist to try to accurately time getting two implants installed, but two weeks after they were installed, the bone around one of the implants started to erode and I exhibited the beginning signs of ONJ, so my oral surgeon opted to remove both of them to be safe. I got caught in-between the recommendations of the oral surgeon and the bone house specialist, in terms of when it was safe to have the dental work done, and against my oral surgeons recommendations, I went ahead and had my my last Prolia shot in June and the dental work done in October. Since then I've
learned that I should have waited one more month (5 months out) at least before having the dental work done. I'm now back at square one waiting... I should preface all this information by explaining I don't have my T-scores, but I started at -3.0 at least, and have made some improvements. I'm in the negative 2s now. Also, I have never had one break in my life and I have fallen multiple times before and after starting Prolia... on my wrists, ankles, knees... all kinds of problems and never had a fracture. I also have severe osteoarthritis and I have been told that arthritis of the lower back can skew bone density test scores, so I wonder if my osteoporosis is as severe as test scores indicate. I also strongly believe that as a result of taking Prolia I have many side effects, including higher bad cholesterol, the beginnings of high blood pressure, incredibly painful lower back pain, and excruciating bone aches that are unexplainable. I desperately want off this medicine, but I don't know what to transition to and am basically afraid of all my options. Reclast is out because of the ONJ potential, and the bisphosphonate option, HRT, also sounds bad, in terms of side effects. I'm currently waiting to see an endocrinologist and a rheumatologist to sort through this dilemma and figure out the best options for transitioning off Prolia. I'm also due for my next Prolia shot the end of December, but I don't see any of these doctors until January/ February time frame. I'm not sure if I'm going to have to finish one more Prolia shot, but I need to find a way out of this rabbit hole so that I can get my dental work done and eventually get off Prolia for good. Besides, how many more years can I take it safely?

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So sorry for what you have gone through. I believe Reclast is the only suggested transitional medication used in my MD practice. One poster on this forum posted something about Evenity after Prolia so you could ask about that, but you have done 6 years of Prolia now so from what my doctors say (see also keth McCormick's "Great Bones" book) Reclast is the strongest med to counteract Prolia rebound. Maybe one would be enough to "Lock in" gains and avoid a drop in bone density-? Ask your doctor.

I hope you can avoid another Prolia shot and do Reclast. McCormick suggests using CTX blood testing to time the Reclast properly. You really might benefit from reading his book or at least that section.

It would be helpful for you to know your actual DEXA scores. Sounds like you might be in osteopenia now.

Falls seem to threaten hips but in my experience spinal fractures are often from bending, twisting, lifting, opening windows and eventually even coughing! For now it seems you are out of the danger zone.

Maybe you could do one Reclast and then some Evenity to get off the Prolia though your DEXA scores now may result in insurance denial. Your doctor would have to explain the need to transition off Prolia and yet avoid further risk of ONJ. I hope your doctor can help you get out of this situation.

REPLY
jheieck | @jheieck | 3 days ago

Thank you so much for this feedback it is helpful! I will get that book. The plan was to put me on reclast until the jaw started to show the beginning signs of ONJ. Once that happened, my bone health specialist said it would be dangerous to use reclast as the drug to transition me off of Prolia and went the HRT route. But, the HRT alternative has many risks that I'm equally as concerned about. As I said in my post, I feel like I am in a catch 22 situation without any safe way out. But, you are right I do not want to have not one more Prolia shot. I don't have much time because my last Prolia shot was June 12th 2024. 😢

REPLY
1 reply
gravity3 | @gravity3 | 3 days ago
In reply to @jheieck "Thank you so much for this feedback it is helpful! I will get that book. The..." + (show)
@jheieck

Thank you so much for this feedback it is helpful! I will get that book. The plan was to put me on reclast until the jaw started to show the beginning signs of ONJ. Once that happened, my bone health specialist said it would be dangerous to use reclast as the drug to transition me off of Prolia and went the HRT route. But, the HRT alternative has many risks that I'm equally as concerned about. As I said in my post, I feel like I am in a catch 22 situation without any safe way out. But, you are right I do not want to have not one more Prolia shot. I don't have much time because my last Prolia shot was June 12th 2024. 😢

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May I ask your age? I took an trying to work my way out of the Prolia bind. I've had one injection and don't want another. Having just started bioidentical hormone replacement at 76 I am hoping that this will help my bones. Who knows. I m trying to come up with a meds plan that makes sense considering that I've already had five years of alendronate, two of forteo and one of Evenity with good gains and now the first injection of Prolia. What a bind and I have limited faith in my endocrinologist's creativity in helping me navigate. He doesn't do hormone replacement. For that I needed a functional medicine provider. I am getting a second opinion from a well respected young Duke endocrinologist but in the meantime I thought if I didn't get another prolia I injection and did a one time low dose infusion of reclast then either try just the bhrt or tymlos to protect my gains. I've never had a fracture. Again, I may be trying to buy some time before prolia for the remainder of my life. This is so difficult!!!

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1 reply
jheieck | @jheieck | 3 days ago

I am 70 years old I started on Prolia at 63. I've had 12 injections. I have never had a break either. I do have a risk for osteonecrosis of the jaw because the two implants my dentist installed had to be removed because the bone was pushing up out of the gum on one of the implants. Because of this issue I cannot wean off Prolia by taking reclast because it'll worsen the jaw situation. I really only have one option and that is HRT which my bone health specialist, nurse practitioner, has suggested as an option for me. I have never seen an endocrinologist or a rheumatologist but I have appointments with both in the new year and I'm hoping for some help because I also suffer terribly with osteoarthritis. Not sure if this helps you?

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windyshores | @windyshores | 3 days ago

Evenity- at least a few months of it before it becomes anti-resorptive- might be of help in situations involving stopping Prolia but inability to take bisphosphonates.

McCormick suggests getting a CTX blood test. @jheieck that could tell you how urgent it is to get a med to deal with rebound since you are not getting the next Prolia shot (thank heavens).

I just had my CTX done and it is low so I feel comfortable delaying my next Reclast to do some other medical things. Prolia of course is harder to take a break from., But McCormick suggests watching until the CTX starts going up after you stop Prolia to better time Reclast, and maybe that holds true for Evenity. with hormones it might not matter. What about raloifence which deals with hormone receptors?

Your doctor knows best. This is ONJ vs spinal fractures basically.

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1 reply
jheieck | @jheieck | 3 days ago

This is really great information and I appreciate it. One thing I need to look at is getting my CTX scores from June. I can't seem to find them at my portal so I think I have to go to the facility to obtain those. I also agree I am choosing between Bone and spine issues versus ONJ issues. In the meantime I'm walking around with three missing teeth. Thanks again for the advice.

REPLY
kristie2 | @kristie2 | 2 days ago
In reply to @gravity3 "May I ask your age? I took an trying to work my way out of the..." + (show)
@gravity3

May I ask your age? I took an trying to work my way out of the Prolia bind. I've had one injection and don't want another. Having just started bioidentical hormone replacement at 76 I am hoping that this will help my bones. Who knows. I m trying to come up with a meds plan that makes sense considering that I've already had five years of alendronate, two of forteo and one of Evenity with good gains and now the first injection of Prolia. What a bind and I have limited faith in my endocrinologist's creativity in helping me navigate. He doesn't do hormone replacement. For that I needed a functional medicine provider. I am getting a second opinion from a well respected young Duke endocrinologist but in the meantime I thought if I didn't get another prolia I injection and did a one time low dose infusion of reclast then either try just the bhrt or tymlos to protect my gains. I've never had a fracture. Again, I may be trying to buy some time before prolia for the remainder of my life. This is so difficult!!!

Jump to this post

I have gone from one year of Evenity to Prolia. I have had one injection of Prolia and will do a total of 2-3 then will do Reclast. I am also on hormone therapy using the pellets.

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