Prolia

[musicsigns]

I am new here and wondering if anyone has had success with Prolia? My dr is suggesting either Reclast or Prolia. Trying to decide.

musicsigns

[Met00]

Prolia isn't usually recommended as a first-line treatment, but rather for severe osteoporosis that hasn't responded to other treatments. If you do start Prolia, it's essential that each injection is on time, 6 months apart, and if/when you stop you have to go straight onto another treatment at the time the Prolia injection was due. This is to reduce the risk of rebound fractures, and the usual relay medication is a bisphosphonate such as Fosamax or Reclast. If you need medication, I would ask to be put on a bisphosphonate first so that if you do get moved onto Prolia at a later date you can be sure that you can tolerate it.

[Terramar in reply to Met00]

There is an excellent Facebook group Prolia side effects. They have a vast collection of articles on Prolia. Many of the people in the group have had serious disabling side effects. It is something to really think about. Prolia seems to have more new problems over time. There are many other options other than Prolia. Do your own research and do not rely solely on what the doctor recommends. Make sure they work you up fully including bone turnover markers. Have them check for secondary causes. There are no miracles with the drugs. I took meds for 15 years and still have the same osteoporosis. I am now taking a holiday and trying the natural approach with diet, exercise, vitamins and supplements. I found the book Healthy Bones Healthy You by Lara Pizzorno very resourceful. She explains osteoporosis and bone remodeling, vitamins, supplements, diet and exercise. You need supplements and vitamins even with medications but doctors rarely discuss them. It is a good read and is available on Amazon.

[Met00 in reply to Terramar]

Did you mean to post this to musicsigns?

[Terramar in reply to Met00]

Yes I goofed. Thank you

[surf101 in reply to Terramar]

When you stopped Prolia, did you go on Fosmax or any other prescription or just start taking natural supplements? I'm on Prolia & want to stop but not sure how. My doctor wants me to stay on Prolia. Can you recommend a bone supplement? Have heard that "Bone Solid" is good..??

[Augustine1951]

I concur with the other posts. Prolia is a very complex drug as is Reclast. Prolia cannot be discontinued without risk of rebound which is loss of the Bone density gained and in my case more. After stopping prolia after 3 years I lost substantial bone in spine that had been normal BEFORE prolia. I do not think that prolia should be considered a first line treatment for osteoporosis. It’s mechanism of action is still not fully understood and the rebound phenomenon has caused spinal fracture. Do your own research. Research your FRAX score. Bone quality is more than just density. Do you have family history of bone fracture etc. Prolia can cause very substantial muscle and joint pain. I stopped it due to debilitating pain. I went from being an active 65 year old to hardly able to walk through the grocery store. That is why I quit. And the pain began at the 5 th shot. Which put me in the rebound risk group which increases after 3 shots. The doctors all ignored my pain complaints. As soon as I stopped the pain began to subside although it took almost 6 months to get back to normal. The drug was developed based in the assumption that reducing turnover would not affect bone formation. However since prolia was developed researchers have determined that bone turnover is linked to bone formation in real time. When you stop prolia the turnover process goes into overdrive to clear out all the old bone but the bone formation that would occur normally in conjunction with turnover has been compromised by the drug. So you get rebound loss. I do not know if my spine will ever get back to normal. There is a great resource on Inspire website. Just search stopping prolia.

[Arcadia10 in reply to Augustine1951]

Our stories are fairly similar. I stopped Prolia after 4 shots and worsening side effects. The fourth shot resulted in persistent bladder pain which took weeks to respond to antibiotics, chest pains which sent me to Emergency, and a swollen rash on my eyebrows, eyelids and cheeks very shortly after the injection. That was when the culprit became apparent. For the previous year, I'd been getting increasingly ill with strange, unexplained symptoms. Finally a new GP put 2 and 2 together, and I didn't have any further shots of Prolia after Sept 2019. It took me over a year to feel normal again, despite the acute side effects disappearing after a month or two in each case. I had a major brain fog for almost 18 months on Prolia, and felt dreadful overall. I can't believe how well I feel now comparatively - but obviously my bones are telling a different story. My immune system is now off the low end of the scale - not good in these times of COVID.

Two years on, during which time I've been on risedronate (Actonel), I've had fractures of the right and left sacral ala(e) plus a subchondral fracture of my right pelvis. I'm now on alendronate (Fosamax) which I'm hoping will push my bone turnover down as my CTx got into the 900s on Actonel before the first fracture in Sept 2021. My intention was to wean off the bisphosphonate in Mar 2022 at the 2-year anniversary of my missed Prolia injection, but I'm not so sure now. My DEXA scan is due then, so all will hopefully be revealed. Could I ask you what your DEXA scores were before and after Prolia? I thought the losses took one back to baseline, but obviously not in your case as you say you have had additional loss in your spine. Have you had a DEXA every year for the past 3 years to track what is happening? I was wondering if your DEXA scores got worse between years 2 and 3 off Prolia. My understanding was that everything stabilised after 24 months.

Are you going to stay or alendronate or switch to another drug? I see in your first post that your doctor mentioned Evenity (romosozumab) as an option. Mine did too after my first fracture, but I wasn't keen because it's another offering from Amgen, although the mechanism by which it works is different as it's an anabolic and builds bone. However, from what I've read, it has to be followed after a year with either a bisphosphonate or Prolia to retain gains. I've said 'no' to it a couple of times now, but I'm trying to formulate Plan B in case my DEXA results are frightening. Fortunately I'm not in any pain now and am fully mobile, and have my fingers firmly crossed that more fractures don't occur in my thoracic and lumbar spine. It's all a bit of a mess. The orthopaedic specialist I saw looked at my sacral/pelvic MRI and said "your bones look like custard" - a strange analogy but I got the drift! I really regret ever taking Prolia.

[Augustine1951 in reply to Arcadia10]

Hello Arcadia10. We exchanged info on inspire site. I am pappas. You were hugely helpful to me. I am awaiting my dexa scores which I should see in February. I have been on fosamax consistently since stopping prolia in 2018 It will be interesting to see if the fosamax and the added calcium supplements have allowed for any improvement particularly in spine where I went from -.1 to -2.2 after prolia rebound. I will keep you posted. As you may recall the Evinity was proffered by a P.A. Endo doc. The experienced endo doc said NO. It was not recommended for rebound protection and had caused other complications for rebound which she did not elaborate. My big drop occurred at 18 months post prolia. In Feb 2021 I will be 30 months post prolia. Will see if drop is leveled or not. I have not done any more recent research but will see if I find anything more recent on rebound duration. I recall that the time frame was essentially considered most pronounced in year 1 but mine was much later. So like. Most of this my guess is they don’t know and it is highly individualized.

[Augustine1951 in reply to Augustine1951]

I meant to say Feb 2022 I will be 30 months post prolia

[Arcadia10 in reply to Augustine1951]

Nice to meet you again on this site, Augustine/lpappas! I've just been through our previous messages on Inspire to refresh my memory. It's great to read that you're still on Fosamax and presumably your CTx is still stable in the mid-200s as it was back in July 2021 (not sure if you're having frequent tests done as there seemed to be Medicare limits on testing p.a.). It appears that your endocrinologist specialising in bone turnover issues is taking a conservative approach until your DEXA in Feb 2022 will reveal how your bones are tracking. Possibly you will have to reassess treatment based on those results, but fingers crossed not. That will be 2.5 years post Prolia and I understand from what I've read that the turnover stabilises around 2 years post Prolia, so there should hopefully be no more significant bone loss thereafter.

My own DEXA is due the month after yours, in March, and I am getting concerned about the amount of bone loss I'll be presented with. My recent fractures are a major concern for me as it appears that my bones (well, the sacrum and pelvis, at any rate) are demineralising quickly. Until September 2021, I was feeling reasonably confident that everything was on track, and that I'd be weaning off the Actonel by now. That little pipe dream has now been blown out of the water, so I'm trying to think ahead a bit and formulate Plan B, which might have to include Evenity (but hoping not). If my bones are in urgent need of rebuilding, it may be the only option, but I'd need to make sure that I'm beyond the rebound fracture danger period (which Prof Lamy, the Swiss professor, states is 24 months). I found a case report recently where romosozumab was not effective in preventing rebound fractures post-Prolia: sciencedirect.com/science/a... (which may, in fact, be the one that you refer to in one of your posts). So that doesn't inspire confidence in taking it before the rebound danger has passed. You also mentioned that your endocrinologist said Evenity was not appropriate to use to prevent rebound fractures after Prolia discontinuation, but was not specific as to the reason why not. So it appears that Evenity's function is specifically to rebuild bone. Endodoc is in favour of it over Prolia, but when I read about the procedure to retain the bone gains using a bisphosphonate or the dreaded Prolia, is just seems, as you say, to recycle the problem. I noticed that your question to endodoc about the effectiveness of Evenity for Prolia rebound wasn't answered which is a pity, as he is highly knowledgeable and it would have been good to have an answer. I do like his off-label protocol of using Evenity for 6 months followed by a bisphosphonate and am keeping that handy in case I have to go down that path. My preference would be to get my CTx numbers down to below 400 over the next few months, get DEXA results which take me back to pre-Prolia baseline, wean off the Fosamax I'm now on, and then take strontium citrate. When I was trawling Inspire looking for your posts, I came across one by Phoney-Boney who has had great results with SC over several years: inspire.com/m/Phoney-Boney/...

Do keep me posted as to your DEXA results in Feb and I'll post mine in March. We're both in the middle of what you aptly describe as a quagmire. Hopefully 2022 will be the year we're out of it safely. That really will be a happy new year!

[Augustine1951 in reply to Arcadia10]

I am so sorry to hear of your ongoing issues. I truly understand how stressful this is. I don’t really know what to expect come February Dexa but am hoping for at least stability. Your ongoing loss is of great concern. The research I did which tracked cases up to 3 years post prolia said most regained to baseline after 3 years whether they took bisphosphonates or injectables. However I could never find much on comparable cases with significant bone loss below baseline. Of course you must consider Evinity as an option if it has a decent chance of improvement. Perhaps you could post specifically asking Endodoc to respond. I will also ask my endo about this when I see her and ask her if there is any more up to date information on rebound that I can share. She is highly regarded and seemed to be tracking the research. A lot of the discussion seems to go in conferences since there are no studies to address the protocol for rebound. All the best to you and I will most certainly stay in touch via posts. Be well and my prayers are with you.

[Arcadia10 in reply to Augustine1951]

I think, for both you and I, our respective DEXAs in February/March will be a decision-making point as to the way forward. The main indicator that I have at present of severe bone loss is the rebound bilateral sacral ala and unilateral pelvic fractures which I assume must be the result of rapid demineralisation in that area. The DEXA will reveal if the loss is more widespread. The regular CTx blood tests I have done are also an indicator as to high bone turnover, but my recent fractures are possibly distorting those results now. Ultimately I think BMD and CTx stability is key as they should indicate that the rebound period has ended. Then one can plot a way forward to build bone, be it with Evenity or some other drug, or even just exercise, supplements and good nutrition. If, as you say, the reversion to BMD baseline takes 3 years. I'll have another year to go ☹️ You'll most likely be luckier in that you'll be 30 months off Prolia next month. I'll be at 24 months.

Speaking of stability, I was looking at my annual DEXA scores from 2012 (which I have in an Excel spreadsheet which makes them very easy to compare) and see that between 2012 and 2018 (when I started Prolia), they were actually stable - and in fact improved in the 3 years I was on strontium citrate. I'm even more annoyed that I took my eye off the ball and let myself be put onto Prolia in that case. There was a drop in my femoral neck T-score in 2018 from -3.1 to -3.4 which might have been the trigger for the endocrinologist to act, but I'd been on crutches for 3.5 months prior to that DEXA scan after a non-fragility tibial plateau fracture, and I would imagine that not weight-bearing could affect the outcome of the femoral neck density. Similarly, my total hip density was -3.1, down from -2.8 the previous year. I suppose that's all water under the bridge now, but in future I will be more vigilant in looking at BMD stability and the deterioration thereof as being an indicator that action is required. Like you, I really want to avoid any further treatment, especially Evenity, which has only been on the market for not even 3 years, followed by an anti-resorptive, and aim to wean off these prescription drugs as soon as safe to do so.

I would be grateful if you would ask your endo about why using Evenity as a rebound drug isn't advised and what the other issues are. I did post on Inspire asking a question about what to do to prevent further rebound fractures which occurred after stopping Prolia and mentioned that Evenity had been recommended, in the hope that endodoc might spot it and answer. A lot of people are on holiday at this time of the year, so that might still happen 🙏

In reply to your post below - yes, that's a good point about bone quality vs. density. The orthopaedic specialist told me that my pelvic ring bones are like "custard" (a strange analogy, but the implication was not good!). I will ask my endo if there is any other measurement or testing that could be done. I had thought that those fractures were the Prolia rebound effect, but it does (at this stage) appear to be limited to the sacrum and pelvis, so there might be some extraordinarily weakened bone in that area for some reason. Along those lines, a thought is that it possibly might have something to do with the fact that my total hip increased by 15% in the 2 years I was on Prolia. Perhaps that is why I'm having the rapid reversal, i.e after rapid increase, hence fractures, whereas my spine which increased by only 8% doesn't seem to be affected (fingers crossed!). Anyway, I'll pose that question to the endo - a good suggestion 😊

[Augustine1951 in reply to Arcadia10]

I also wonder if you should press your endo on the issue of bone quality v density. Your Dexa scores are better than mine at the hip where you seem to have had issues. One of the issues I kept seeing repeatedly in the research is that bone density is used to measure osteoporosis risk because they do not have easy mechanism to measure bone strength or quality. Perhaps you are needing an assessment of WHY the bone is vulnerable not just a bone density strategy. If the rebound you have suffered is in the context of already weak bone then you are having a double impact. Bone loss and weaker matrix. I am way over my head here but just wanted to mention it. Given your history some more complex testing may be in order.

[Viazoy]

Prolia destroyed my active life. Shot briefly delayed because of change in medical personnel left me with three fractured vertebrae, huge pain and permanent disability.

[Arcadia10]

Would you mind sharing your DEXA scores, musicsigns? A lot of people seem to be put onto these drugs unnecessarily by over-zealous doctors, even if they are only osteopenic. Often exercise and diet plus taking appropriate supplements such as vitamins D3 and K2, boron, magnesium and checking intake of calcium would be a more appropriate course of action. If your bone density is so poor that you really need to go onto a drug, research the side effects as they can be quite dire if you're one of the unlucky ones. Make sure you know what you're getting yourself into. As Met00 says, Prolia should not be a first-line drug. If you can't tolerate it and have to stop, as I did, getting off it safely is fraught with difficulty and is not guaranteed. With an oral bisphosphonate, you can stop whenever you like. As Terramar says, make sure you have bone turnover markers done before deciding on any treatment. Your parathyroid might be an issue causing osteoporosis which doctors somehow don't always consider.

[Mark_ABH]

Hi musicsigns, here is a brief rundown of information on all the osteoporosis drugs approved in the U.S. Reclast is listed under Bisphosphonates, Prolia is listed under Denosumab (its generic name): americanbonehealth.org/fda-...

If you are in the U.S., I also suggest you take a minute to fill out the American Bone Health Fracture Risk Calculator™ to get an estimate of your 10-year risk of breaking a bone. You will get a result of Low, Moderate or High. If your risk is low, you might not need to start a medicine at this time. americanbonehealth.org/calc...