Dealing with Prolia: Hi Everyone. I am new here... - Bone Health

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Dealing with Prolia

Dmck009 profile image

Hi Everyone. I am new here. I am 64 years old and ad my first and only Prolia shot on August 4, 2021 because I was diagnosed with osteroporasis and have not been well since. (Sever back ache, fatigue, muscle aches and sore arms and legs) I thought I did my homework but wish I did more. Knowing what I know now I should of not had to go on Prolia. Went back to my Endo and she is starting me on Fosamax after the 6 month waiting period. (believe it or not she wanted me to start Fosamax now while I have Prolia in me and when I researched it, it said not to combine the 2 drugs due to serious risks) I do not want to be on any other meds. If I don't I have risk of Spine Fractures. I cry everyday and can't sleep, my anxiety is through the roof. Is there a light at the end of the tunnel. I am seeing a second Dr. on November 24 hoping she will give me different options. Is there anyone else going through this. I could really use all the support I can get. Thank you!!

14 Replies

I'm sorry that you're having such an awful time after your first Prolia shot. This drug affects people differently - some have no side effects and some seem to have most of them all at once! These should dissipate over the next 6 months as the drug wears off (although some people have reported that their side effects linger for a while longer).

There is a positive to this. You are one of the fortunate ones (in a perverse kind of way) who found out sooner rather than later that Prolia doesn't agree with you. After only one shot, you should be safe from the rebound fractures which can occur after having two or more shots. It is apparently safe to stop Prolia after one shot without taking a relay bisphosphonate like Fosamax. If you'd had more than just the one shot, you'd have to be on a relay bisphosphonate for around 2 years to ensure that you didn't suffer multiple vertebral relay fractures. So you don't really have to take another drug after Prolia unless you have severe osteoporosis - and then it is up to you anyway.

Might I ask what your DEXA scan results showed, your T-scores, etc? They are an indicator of your requirement for medication, although some people treat their osteoporosis the natural way, i.e. without meds. I must say that I'm surprised your endo put you straight onto Prolia as it should not be, to my understanding, a first line drug for treating osteoporosis. It's preferable to start with the oral bisphosphonates which you can stop at any time. If you have a bad reaction to eg. Fosamax, you just stop taking it. Prolia, however, is a drug doctors are telling their patients that they have to be on for life - unless, like you, you only have one shot and can also stop without risking the rebound fractures.

I had four Prolia shots over two years and am now in the process of weaning off both the Prolia and the relay bisphosphonate - quite a process, I can tell you, involving frequent blood tests to see how my bone turnover is doing and adjusting the dose of the relay drug accordingly. You have saved yourself all of that by finding out early on that Prolia doesn't suit you.

Try to be patient and the six months will pass quickly. Use the time to research not only Prolia but the bisphosphonates, side effects, etc. An excellent book to read is "Your Bones" by Lara Pizzorno which you can order online. It goes into the osteo drugs in detail, including pros and cons, as well as alternatives for treating osteoporosis.

All the best!

Dmck009 profile image
Dmck009 in reply to Arcadia10

Thank you so much for your response. I feel like you have lifted a huge weight off my shoulders just knowing you understand what I am going through. My T-Scores are reading -2.4 for spine...left hip Femoral neck -2.7 and right hip femoral neck -2.2...then it says left hip total -1.9 and right hip total -1.6..I was really upset with my endo because when I went back after the Prolia shot to tell her I wasn't feeling well she told me I had MILD oseoprosis. I could kick myself for not getting a second opinion and trusting her that this was the road I needed to take. She never went over the numbers with me and said I needed to start Prolia. She wanted to put me on Fosamax now but when I did my research it said the 2 should not be together because it would increase side effects so she wants me to start Fosamax in February when my 2nd Prolia shot is due. I do know people on Prolia who have no side effects and are doing very well on it. I was very reassured when you mentioned I probably wouldnt need to go on a relay drug to prevent fractures. I really want to go drug free. I have had no fractures what so ever. I did find a group on Facebook about Prolia and what the women on their have said scared me so much that I no longer can go on it. Thank you again for reaching out to me. Your support is so appreciated!!

Arcadia10 profile image
Arcadia10 in reply to Dmck009

I'm only too happy to have been able to be of assistance in alleviating at least some of your concerns. Being diagnosed with osteoporosis/osteopenia is usually a shock as it often comes out of the blue and can be very scary, especially when you start realising that you aren't being given the correct information by your doctor. This site contains a wealth of information and there are so many friendly, knowledgeable and concerned people who have been down the exact same path that you are now starting on. You can find all the help you need here!

Looking at your DEXA results, it appears that you are only osteopenic at this stage, apart from your left hip femoral neck which is osteoporotic. It's alarming that your endo would pull out the big guns (Prolia) for an osteopenic patient, especially one who hasn't had a fragility fracture which is usually the trigger for prescribing osteoporosis meds. I think speaking to another doctor is very wise in light of your less-than-positive experience with your current endo. I agree that wanting to put you onto a second osteo drug concurrently with Prolia would have been a bad course of action, and seems to imply a significant degree of ignorance on the part of your endo too. Good for you for doing your own research and avoiding that potential disaster as I think taking those two drugs together might have caused even more side effects than you have now.

Between now and your appointment in November, I would encourage you to read as much as possible about osteopenia and osteoporosis, the drugs used, etc so that you can have an informed conversation with your new doctor and avoid being pushed into a treatment you don't want. Being your own health advocate is very important as doctors don't know everything, and some are very poorly informed, in my experience - and their patients suffer as a consequence. There are doctors who really jump the gun on this and seem to think that all women in their 60's should be on an osteo drug, and don't investigate thoroughly to make sure it is warranted. The side effects can be dire - and life changing in a bad way if you're one of the unlucky ones. I have decided that I want to be off these drugs too, as do many people on this site. There are natural alternatives. Read up about strontium citrate which Lara Pizzorno covers in her book.

I hope you start to feel better soon 😊

Dmck009 profile image
Dmck009 in reply to Arcadia10

Hi Arcadia10…just spoke to my endo & she said I must go on Fosamax or Reclast in February after Prolia wears off or will b at risk for spine fractures…I explained that I’m very nervous to go on another drug but she said I have no choice…so confused of how Fosamax will effect me since I’ve heard many conflicting side effects…seeing another Dr in November…soo confused but also terrified of fractures.

Arcadia10 profile image
Arcadia10 in reply to Dmck009

Is that your current endo, the one who gave you the incorrect information about taking Fosamax while you're still on Prolia? If so, I'd speak to the second endo in November before making up your mind, and perhaps even a third. IMO, your current endo appears to be woefully misinformed and I'd be cautious about following her advice. You have osteopenia and mild osteoporosis in your left femoral neck and no fragility fractures, so I would question why you're on an osteo drug in the first place, let alone Prolia. I would be looking for a more informed endo if I were you. Your current one sounds downright dangerous.

Reclast is an intravenous drug. If you have side effects, it's in your system for a year. The potential long-term side effects, like osteonecrosis of the jaw, are worse on the IV drugs. Avoid!

I know it all feels confusing and scary right now, but you're in the best position after only one Prolia shot. You DO have a choice, regardless of what your current endo says you should do. The best choice is an informed one, and that goes hand-in-hand with finding a doctor who is knowledgeable and who you can trust. It took me a couple of attempts before I found the right endo, someone with a track record of successfully managing patients off Prolia. I have to have telehealth consults as she's on the other side of the country, but she's excellent, across all the issues, and came highly recommended by someone whom she'd managed off Prolia. Keep looking, ask around. Ask people on this site who live in your area.

My understanding, and I'm sure a lot of people on this site would concur, is that a relay drug is not required after only one Prolia shot. Search the medical literature online to verify this for your own peace of mind, but ultimately it is a decision you should make under the care of a competent and trusted medical professional.

Good luck!

Dmck009 profile image
Dmck009 in reply to Arcadia10

Yes I totally agree. The last thing I need is teeth and jaw problems. Actually I woke up this morning with not teeth pain but almost like a pressure from the upper teeth to my sinuses....I'm guessing from the Prolia. They list that as a rare side effect but reading has lead me to believe more people are suffering from teeth and jaw problems than they report. I did tell her I would not go on either of those drugs and she did say I am at risk for fractures if I don't. I am looking into getting an appointment with a 3rd dr also. Thank you for your EXCELLENT advice and thank you for being there for me. I also mentioned to her AGAIN my severe back pain and no response whatsoever about that. When I got off the phone with my endo yesterday and I think it might of been the closest I've ever been to having a breakdown. The stress and anxiety are terrible. I will keep you informed of whats happening and again I can't express enough my thanks for all your advice.

Arcadia10 profile image
Arcadia10 in reply to Dmck009

I know how you feel. It took me a year to find a good endo and the only thing that kept me sane was the help I got from the people on this site. It does get better, I promise, and you really are one of the lucky ones as you've only had one Prolia shot. I'm having to take a relay drug for two years. You don’t. You just have to be convinced of that.

Brilliant advice from Arcadia10 . You could also look at my story. In another community I have just read about someone else who does some things similar to me, and has improved her bone density. So there are reasonable alternatives to medication, if only the doctors knew about them. Of course your decisions have to be made based in part on the seriousness of the bone thinning. Hopefully you were also tested for "secondary causes of osteoporosis" before being prescribed the medication. If not, please ask the new doctor to do so. Hyperparathyroidism, for one example, seems to turn up surprisingly often on the forum and it's not something you'd really know about without a test. It causes too much calcium to be withdrawn from the bones and until treated means OP treatments of any kind won't be effective.

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

Dmck009 profile image
Dmck009 in reply to HeronNS

Thank you so much for the information. I was not tested for secondary causes but will be asking my new endo to do so. I am hoping I will not need to go on a relay drug because I only had 1 shot but have read that people with one shot and did not do a relay drug had fractures. So overwhelmed and confused.

HeronNS profile image
HeronNS in reply to Dmck009

I believe initially it was thought that one would be okay after one dose only, but like everything, the side effects become more known when there are more individuals involved. The very rare side effects take longer to show up. And I don't really know, but one could speculate there may be a difference depending how serious the osteoporosis was at the beginning. Some people may simply start out with more bone density than others, and I don't know if anyone has yet studied this to find out which people would be more or less susceptible.

I suppose your choice is to take alendronic acid for whatever seems the minimum appropriate amount of time to counteract Prolia after effects, or to dive straight in right now with the bone health protocol you've been introduced to via this forum. You can only benefit from doing this, no matter what you decide when the six month mark gets closer, but I think strengthening your bones the natural way could put you ahead of the game and limit the amount of time you might need the AA.

Good luck - and I hope you start to feel better soon.

Dmck009 profile image
Dmck009 in reply to HeronNS

Thank you so much!!

More encouragement; I've just read this post, second good news story today:

healthunlocked.com/boneheal...

So glad you’ve give some great advice and support. I have had lots of support here. Prolia was making me very ill. I’m on Actonel for a while as I wean off the Prolia rebound risk. Going natural as soon as possible. Love how I always learn here and now have some reading from recommended book to do which is really good.

Dmck009 profile image
Dmck009 in reply to MsHoliday

Thank you for your support. I can ask how many prolia shots you received and how your doing on the rebound drug. I'm hoping when I see my new endo in November that I won't need to go on a rebound drug since I only had one shot of Prolia which I am not doing well with. I have had some wonderful advice and support in this group and I am so grateful for everyone who has been here for me. I like you will be going natural also.

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