side effects of the prolia shot

[LilEgg]

I have been getting the prolia shot close to 8/10 yrs… never really having major side effects. A little fatigue a little soreness the last two shots, probably three shots—the more I think of it the side effects are getting extremely worse to the point I don’t want to take it anymore… I had excruciating pains in my knees and left shoulder, elbow and arm. I started looking up side effects on the medications I take… I was so stunned and taken back to see all the extreme side effects and horror stories happening to so many people… Needless to say I want to stop … I also see that it increases your cholesterol levels and mind you. I now need to take Crestor another medication…I want to get off safely..

Has anyone been lucky enough to wean off prolia and if so, what have you done and used as an alternative… To make things more complicated I have a hiatal hernia in my esophagus.

my ultimate goal is not to take any medications anymore and stick to more natural ways

I would be most appreciative and grateful for any insight and helpful hints

[Arcadia10]

I stopped Prolia after 4 shots and unrelenting side effects for over 18 months. A new GP finally made the diagnosis and told me that I mustn't have any more shots, but also that she didn't know how to get me off it safely. So I was left to my own devices and made several mistakes in the process but, 3.5 years later, I've been off the relay bisphosphonate for a year and Prolia is ancient history now. I did break a few bones in the process, so am happy to help anyone wanting to stop Prolia learn from my mistakes.

The definitive guide to getting off Prolia was written by Prof. Olivier Lamy: researchgate.net/publicatio... Unfortunately I did not come across this until a year after stopping Prolia and had been put onto risedronate (Actonel) by a less-than-knowledgeable GP. The gold standard oral bisphosphonate to use is alendronate (Fosamax). Prof. Lamy's step-by-step protocol is in his research paper in Table 3 (oral alendronate) and Table 4 (IV zoledronate). It is imperative to have regular CTx blood tests done in order to check whether bone resorption is increasing too rapidly and, if it is, to move onto more potent treatment to suppress the rebound.

Getting off Prolia safely is a mission, but can be done. Lots of people on this and other sites have done so. The key is to find a knowledgeable GP or endocrinologist to manage the process - and to become informed oneself as to what should be tested for and when.

Good luck!

[LilEgg in reply to Arcadia10]

Hello… thank you for responding. I feel so lost with all of this …If I’m understanding you correctly… The best way to come off the prolia shots is to start Fosamax.. if so, on a daily or weekly basis? I’m having a hard time reading and understanding the research… you are so correct in finding the right doctor, which unfortunately is not easy I have a small window since my next dose is in December of which I am not doing… I’m going to print out the research and read again hopefully I can understand it better on paper then on my phone. Again, I want to thank you for all your input, it makes going through this a bit easier knowing other people went through this.

[Arcadia10 in reply to LilEgg]

Fosamax (alendronate) is a weekly tablet. You have to take it at the same time on the same day each week, and it MUST be on on empty stomach with at least one glass of water, so first thing in the morning. You also MUST NOT lie down for 30 minutes after taking it as it is an acid and can burn a hole in your oesophagus if it is not absorbed immediately in your stomach (I know of someone this happened to). I used to take mine every Monday morning at 8.30am, then stand in the kitchen reading emails, news etc on my Android tablet 😊 for 30 minutes while drinking three large glasses of water to wash it down. I then went for a walk, so only ate for the first time when I came home (having an empty stomach increases absorption). Getting out of the house resisted temptation! You really have to be quite meticulous about this, but one gets into the routine quickly.

I think it's a good idea to print out Prof Lamy's paper and take it in with you to your doctor or endocrinologist to discuss with them. They will have to send you for regular CTx blood tests as per Table 3 (if on alendronate) to make sure that your bone turnover is not increasing too quickly which can cause vertebral fractures.

The other option is the intravenous zoledronate (Reclast) which is given once a year but that's more potent and can have more unpleasant side effects if you're unlucky. I would start with the weekly tablet first and see how you go with that unless, of course, your doctor thinks otherwise.

Good luck!

[LilEgg in reply to Arcadia10]

Thank you so much you have been so helpful! I’m not a fan of another infusion… I’m so afraid of the side effects… When I first went into menopause, I did take Fosamax it bother my stomach a bit… that was a long time ago… since then, I periodically take stomach medicine for my hiatal hernia(was discovered a couple years ago) when it acts up… I will now take it on daily basis to prevent any stomach issues… I’d rather go this route continue with my vitamin D… I have been reading many replies to your posts other people have been using over-the-counter vitamins and minerals and bone broth. I am going to use as well. I will always be extremely grateful to you and this site I came upon it accidentally … I wish you all blessings and good health..

[Arcadia10 in reply to LilEgg]

You're most welcome. This site has been a great source of information and support to me too over the past few years in my own journey to get off Prolia.

You might like to consider taking Vitamin K2 which directs calcium into your bones, as well as boron, magnesium, zinc, Vitamin D3 if you're not getting enough sun exposure, and melatonin. Also make sure you're getting enough calcium, preferably from your diet instead of taking supplemental calcium. Besides taking these, I have replaced the conventional osteoporosis meds with over-the-counter strontium citrate.

[LilEgg in reply to Arcadia10]

This is so good to know! Thank you so much❤️ May I ask another question? How long were you on Fosamax? I know everyone is different. I would like a general idea… From what I understand it stays in the body long after you stop using it.. I am making a list of these things to buy and I’m looking into making my own bone broth… I’m aiming to start taking my stomach medicine in September, and gradually add these over the counter items one by one this way if any is bothering me, I’ll know which one it is-hopefully none I’m pretty positive I’ll be OK with all of them…this way in December when I’m due for the shot I’ll start the Fosamax…already on these vitamins and minerals…I’m waiting till September only because again I had some issues with a Prolia shot and I want the side effects to go away before I start anything new. My doctor knows I do not want any more infusions….I asked for a script for blood work to check my levels on everything. I also have an appointment with another doctor for a second opinion….again, thank you so much for everything I have you and everyone on this site in my prayers❤️

[Arcadia10 in reply to LilEgg]

You have to stay on the weekly Fosamax for at least two years. It's also imperative to have CTx blood tests every 2-3 months as per Prof Lamy's protocol to make sure that your bone turnover isn't rebounding too quickly. If it does, it might be necessary to switch to the more potent IV Reclast.

You're quite correct - the bisphosphonates like Fosamax, Reclast, Actonel, etc stay in your bones for about 10 years. So it's really important to make sure that your teeth are in good shape and practice excellent dental hygiene particularly while on them because you run the risk of osteonecrosis of the jaw if you have to have any invasive dental work, like an extraction or an implant, done. The risk is actually the same while on Prolia but of course that wears off very quickly after six months if you stop the shots - and then you run the risk of rebound fractures if you don't follow Prolia with a bisphosphonate.

Just remember that your only two options to get off Prolia safely are Fosamax or Reclast. I was put onto Actonel (risedronate) which didn't do the job of suppressing my bone turnover effectively - and I broke my sacrum and pelvis after 18 months during which time my CTx increased steadily. Your CTx really must stay below 400 mg/L while on the relay drug. The GP who prescribed the Actonel was quite ignorant about how to get a patient off Prolia and unfortunately there are a lot of doctors out there like her. Read Prof Lamy's protocol until you're sure you understand it and take it with you to your appointments.

It's great that you're being proactive and getting a second opinion from another doctor and also good that you're having the necessary blood work done to give you a baseline before you start Fosamax.

As a matter of interest, what were the side effects you had with your last Prolia shot?

[LilEgg in reply to Arcadia10]

The last two shots were excruciating pain. The one I received in December I started getting horrible pains in my knees and I couldn’t bend or climb into bed, and it didn’t register to me to associate it with the prolia shot…( since I’ve been on it for so long )The pain started coming little more than a month after into the new year. This past one I received in June 6 weeks after the shot, my whole left side of my arm up to my shoulder to the side of my mouth. I was in pain. I couldn’t bend my elbow. I kept getting numbing, tingling sensations in my hand my teeth on my left side felt a little funny. Thank God I had a routine dental appointment had a cleaning they took x-rays. Everything was fine… it finally hit me to check on prolia side effects.. I kept blaming my age(im 67) running around with my grandchildren I still work part time… when I started doing the research I realize many of the things that were happening to me were listed and I called my doctor. I want off the Prolia. He stated it’s either Fosamax or the reclast.. I’m just so afraid of another shot… if I had to do this all over again, I would never ever take medication… i’m just so annoyed that I’ve been on it for 10 years… I asked him at one point was I’m coming off it he explained he just assumed it would be never since I was tolerating it…. I’m starting to feel better now my hands, my arms my elbow are fine my mouth a bit still not as severe and I was so afraid of ojn… I called back my dentist. He says I’m fine. It happens more with extractions and dental work. My x-rays show everything is good. My mouth is feeling better just taking a little bit longer, so I keep praying everything is good with that.

[Arcadia10 in reply to LilEgg]

Your side effects sound really debilitating (and sorry - I now see you described them briefly in your original post). How awful to experience them out of the blue and obviously after so many years on Prolia without any issues it would take a while to connect them to the med. I had a similar experience but with different side effects - the first shot was fine, and then I felt really awful after the second, third and fourth shots. It took me 18 months and consulting many doctors and specialists to connect them to Prolia. They all said that none of their patients had any side effects from Prolia which I have a difficult time believing with hindsight and after connecting with patients on HealthUnlocked. Doctors just don't know much about this med and patients seem to react differently as well which confuses things. Some people have no problems at all, and others have a terrible time from the outset.

As far as I'm aware, Prolia was only approved for 10 years when it was put on the market in 2010. I did ask the endocrinologist who prescribed it for me what would happen after 10 years and she was rather vague, saying it would probably get further approval. I haven't really seen anything to indicate that that happened. I think doctors are crossing their fingers and just leaving their patients on it.

[LilEgg in reply to Arcadia10]

I am so angry we’re basically the guinea pigs for them… and so afraid to start Fosamax…worried about my stomach and hiatal hernia but I know I have no choice I’m also afraid to use the reclast… I know they are both basically the same thing… I just don’t understand all that medicine in a one time infusion supposed to last a year….and im not keen on it entering in a one time shot… if I’m having issues with the Fossmax, I could stop a little bit and then start again… I don’t know I still have to read up on everything and make a list of my questions to ask to the doctors… on top of all this, my mom suffered a stroke. She’s getting better thank God, but she cannot live alone anymore so I’m in the midst of making arrangements in my home to bring her here. She’s 93…frail but in good spirits… a little forgetful, and I’d rather her be with me. When I could cook and give her her meals and keep an eye on her.

[Arcadia10 in reply to LilEgg]

Please be aware that you MUST take the relay bisphosphonate (Fosamax or the IV Reclast) consistently for at least two years after stopping Prolia. You can't just stop and start the Fosamax if it doesn't agree with you because you then run the very real risk of sustaining multiple vertebral rebound fractures. I cut back on the Actonel (which wasn't the most efficacious med anyway) after 18 months - and a month later broke my left-side sacrum followed a month or two later by the right-side and my pelvis, so beware of messing with the process of weaning off Prolia. If you feel that you can't tolerate Fosamax because of gastrointestinal issues, then you'll have to switch to the annual infusion of Reclast immediately to suppress the rebound. Reclast bypasses the gastrointestinal tract because it's an infusion into a vein, so it's better tolerated by people with GERD.

It sounds like you have a lot on your plate with having your mom come to live with you, so you need to make sure that you're fit and well and so able to care for her. Skipping a couple of the Actonel put me in hospital for a week and on crutches for six weeks. You don't want to be in that position with your mom requiring your attention.

[LilEgg in reply to Arcadia10]

Thank you so much for your help and your dedication to keep answering me and guiding me. I truly truly appreciate this!!!!

I will do some research on the re-clast make my list of questions for the second opinion doctor and go from there. I do have some time and I understand I have to be on it for at least two years. And someways the infusion is easier one and done… I’m just so afraid of having that medicine all at once…I’ll look into it again versus the Fosamax…I like to know which one works better on the rebound…. Fosamax, you continually taking it all year versus the one time infusion…. I am leaning towards the tablet…but I will ask my endocrinologist if it’s not agreeing with me how quickly can we start the infusion so I don’t have any issues. I do see my primary and the second opinion-doctor a month before my visit with my endocrinologist in December, it’s a short window, but I do have time to ask questions with them as well 🙏🏼again thank you so much my friend. Blessings and enjoy your day.

[PoohBear72 in reply to Arcadia10]

Thank you so much for that post. Helpful.

[paxom]

I have osteoporosis and the docs are recommending drugs, of course. I have held off, and after reading your post, and going to continue to search for alternative solutions. Thanks for sharing your experience. Good luck with finding a better solution.

[RubymyT in reply to paxom]

I used Actonel for 2 years , but guess I'm too advanced it didn't help the situation, thats why I had to go on Prolia . I broke both elbows and a hand . I have several spinal fractures, I am afraid of Prolia , but what other choice is there

[paxom in reply to RubymyT]

I have an 89 year old friend who has been on Prolia for a couple of years with good results. However, everyone reacts differently to different medication, so I am searching for other solutions. I could regret it, but you can only do what makes the most sense given your situation.

[Aquagrl in reply to paxom]

I'm 72, and have been on Prolia for 2 years ... also, with good results and no problems ( one of the lucky ones I suppose) when I started, my doc assured me none of his patients has had issues with the drug and they have had great results...I am thankful that I've not had any issues, however, at this age who knows when a tooth is going to act up, even with dental visits every 3 months, ( I don't want to take chances), so I am thinking of asking to get off of it and try something else. At age 60 after 10 years straight of Boniva, I broke my femur in a fall...they took me off the Boniva, and I just took calcium, vit D, and walked - however I finally regressed into osteoporosis and was advised to take the Prolia...This thread of answers has been very beneficial to me and I thank you all for your input.. ( BTW for whoever is taking boniva - there is supposed to be a "drug holiday" during the use of that drug, something like 6 months on and 6 months off - this is a fact I was not made aware of until my broken femur...so ask your doc and also do some research if you are taking this med for osteopenia, etc.) None of my docs ever mentioned that, however I think my break was soon after they discovered the need fro a drug holiday when using Boniva, so they maybe really did not yet know...

[99real]

To underscore a previous comment about stopping Prolia, current research suggests you may suffer fractures if you do not relay onto another drug quickly. pubmed.ncbi.nlm.nih.gov/287...

[Kgud21]

I was on Prolia for about 3.5 years. BMD wasn’t even that bad, in the -2 and 1.5 range. No side effects whatsoever until…After the two year mark, I started getting a wierd thigh pain. Saw my rheumy and two diff orthos. They couldn’t find anything. After a year of intermittent pain and no diagnosis, I plopped down on my couch and felt a sharp pain in left leg. It was a fracture. Had rod put in left leg. Had rod put in right leg also, as it looked like it might fracture. Both due to use of Prolia. I transitioned to Tymlos for 1.5 years, then fosamax for a few months. Three years later, no fractures. No OP drugs, never again. I do weight lifting, walking, cardio and take several supplements for bone: strontium, bone booster, K2 MK 7, calcium and Vit D.

[nynyny in reply to Kgud21]

Congrats. Why didn’t you transition straight to Fosomax?

[Kgud21 in reply to nynyny]

Tymlos activates your bone-building cells to rebuild the bone you’ve lost. Different mechanism than fosamax. I think it sort of supercharges the osteocytes but can only be used relatively short term

[LilEgg in reply to Kgud21]

I never heard of tymlos… I’m just so afraid of any infusion… I’m glad it worked out for you, but why didn’t you go straight to Fosamax? Also, what is the name of the bone booster you are taking and how much of the K2 and MK7 and calcium and vitamin D strontium supplements as well…thank you for this info!

[MayGodBlessYou in reply to Kgud21]

how did you transition to tymlos, please? did you just start it after stopping prolia? thanks

[Kgud21 in reply to MayGodBlessYou]

Yes, started taking tymlos a few weeks after leaving hospital and rehab. Rx in January, started tymlos in March

[Grandk23sc]

Here another resource thats very informative

link.springer.com/content/p...

[1whoisblessed]

First off, I would like to say how sorry I am that you are experiencing all of this. I too was horrified when I read about the side effects from Prolia! I started doing some research for natural alternatives. They are out there. I've been taking one for 8 months now, no side effects. I'm not eligible for another Dexis scan for about 1 &1/2 years. In the meantime, I continue weight lifting, cardio, stretching and eating right. Taking my daily vitamins, don't smoke and don't drink alcohol. Let me know if you would like the name of the natural product (with research to back up its claim) I have found.

[LilEgg in reply to 1whoisblessed]

thank you for responding! Yes, I would like to know the names of the vitamins and natural products you are using… my window is closing. My next shot is due in December. Of course I am not doing it. I’m just so afraid of the outcome.

[1whoisblessed in reply to LilEgg]

The product I'm using is AlgaeCal. (algaecal.com) I'm using the "Bone Builder Pack." I take Whole-Food Complex with added Multivitamin plus Vital Minerals for Women. You can order from mercolamarket.com.

AlgaeCal has a team of Bone Health Consultants Monday - Friday, 5am - 4pm PST, and Saturday - Sunday, 6am to 4pm PST. I talked to a consultant when I first ordered my product. They encourage you to call so you can get help with diet, vitamins, and how to take AlgaeCal for the best results. They also have a team to educate your healthcare provider about their product. They told me which supplements to quit assuming that would lessen the efficacy of the AlgaeCal. The support you'll get from AlgaeCal is very comprehensive.

I would love your feedback if you decide to use these products.😊

[LilEgg in reply to 1whoisblessed]

thank you so much for replying back so quickly! I will be in touch with them as I’m starting to change my process with bone density. I am not doing another prolia shot. I am going to go the way of Fosamax not happy about that either but I don’t have much of a choice … I definitely do not want to do any more infusions, and hopefully I can wean myself off the Fosamax in a couple of years as I do natural and over the counter products… I will be forever grateful to this site for introducing me to wonderful people who are so willing to help I felt so alone and scared when I started reading the side effects, and the long-term use shame on me for not thoroughly reading, but I also am annoyed with my doctor for not telling me everything… again thank you so much!

[1whoisblessed in reply to LilEgg]

I'm not that familiar with the process for weaning off of Prolia, but I will keep you in my prayers for healing and restoration, for God to breathe life into your dry bones.

I'm going to research Fosamax.

It is my pleasure to be of help.🙏

[LilEgg]

thank you so much!! I’ve been in contact with “Arcadia 10” who has been extremely helpful with guidance in coming off the prolia… I weighed out my options, and it seems Fosamax is the best solution… My next research is to find out how long to be on Fosamax and how to wean off of that I do believe I have to be on for a couple years to avoid any bone breakage… and while I’m on that I want to do all the natural and over-the-counter stuff I can… again I am extremely grateful. Blessings my friend.

[Jemi7266]

I used Prolia from 2018 to 2022. I had some muscle & joint pain, but not bad enough to stop using it. In my recent DEXA my bone density has declined so I asked my doctor to put me on a bone building medication. I started Evenity in June 2023, 2 injections once a month.