Hello, I'm new this site. Any help would be greatly appreciated.
I fractured 4 vertebrae in 2021. A Rheumetologist prescribed Evenity for 1 year. It worked well with bone density increasing in all areas. Since Evenity can only be taken for 1 year he prescribed Prolia. After a Dexa Scan a few weeks ago all areas increased in bone density EXCEPT my vertebrae where I had a DECREASE of 12% within the year. He told me this was very rare and that I should continue with Prolia and add Tymlos. Has anyone had any experience like this?
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Rik123
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Prolia is known to cause almost complete reversal of all density gains when it is stopped. There are many many articles written on this in medical journals. Just google “ stopping prolia” Some take the view that is ok you just never stop taking it……however it is also known to cause very signficant joint pain in many people I was one of those Very debilitating pain I stopped after 3 years which is 6 shots and lost all the gains I had made and even more in the spine Vertebra bone is different than other bone. The turnover as it is called occurs most substantially in those on prolia after more than 2 years or 4 shots. A substantial question is why did you suffer the fractures. If it was a bone weakness issue then some intervention may be necessary. I went on fosamax for several years after stopping prolia but will stop that also. The intravenous drugs are far more powerful and thus have more substantial pain side effects than the pill drugs. Just beware. Also you should get your trabecular bone score TDS if you can which is an effort to measure bone quality Evenity is a new drug by the makers of Prolia. Amgen. They had no clue that prolia would cause massive turnover when ceased . Evenity is just new to the market and was trialed I think for only 3 years So there is a lot they may not know about discontinuation.
Thank you for your reply. I'm looking for the reason why I'm losing bone density in my vertebrae while on Prolia. I didn't stop taking Prolia and still losing bone there. My doctor said it's rare and suggested taking Tymlos while on Prolia. Re why I fractured the vertebrae to begin with - I had - 4.0 t-scores before taking any medication but was trying to control it on my own. Then I slipped on the ice landing on my back. I subsequently fractured 4 vertebrae.
At this point I really need to know if anyone is taking 2 osteoporosis drugs at once, the reasons and side effects.
I wonder whether there was an error in the spine result in one of your DEXA scans, so you haven't actually lost 12% density? That's an incredibly high amount of loss in 12 months! Prolia is meant to benefit the spine more than the hips, so you wouldn't expect to see that kind of loss. The only alternative I can think of is that Prolia may not be a good relay drug to follow Evenity.
Thank you for your thoughts.Yes, my doctor also said that the accuracy of dexa scans on very thin bones has been questioned. I'm going to try a REMS scan if I can in NYC. It looks like the company has recently opened an office here in New York.
Re Prolia as a follow-up to Evenity hmmm maybe. But this doctor is supposed to be the guru for Osteoporosis on Long Island and has used Prolia for a follow up with all of his patients. But you never know.
The name of the company that makes the machine is Echolight in Italy. They have distributed the machine in Canada and the United States. It is called a REMS scan and is performed on the Echolight machine. It's very much like a sonogram and measures bone density and fragility like a DEXA scan. I look at it like a confirmation of the DEXA. I had mine performed in Wayne, NJ. I have a list of locations if you are interested. Send the state where you live.
Evinity has little real world experience beyond the trials. When Amgen ecountered the spine breaks after stopping Prolia the science indicated that the premise of prolia as to how the turnover process works biologically may have been incorrect. The assumption was turnover followed bone creation but more recent research suggests that they occur silmultaneously and that you must reach a critical mass of bone turnover to start bone creation. If you don’t reach that triggering event you dont make new bone. I had the impression that the science is not yet fully elucidated on how these drugs interface with the natural bone process or with each other so I am not surprised that unexpected bone loss results occurs with prolia after evinity. I would be very very cautious about layering all these drugs due to the side effect of joint pain. I have no confidence in this science so I may be a poor person to give advice.
I'm not one for medication either. But when the spine surgeon said there was nothing he could do for me after the fractures and said that I needed medication, I felt that there was no choice. Now the idea of layering medication is very scary. I might have to take my chances, just stay on Prolia for life and get a REMS scan.
This may be old news but I would suggest a second opinion consult with an experienced endocrinologist who is up to date on the latest developments in these drugs and their interactions. I went to Mayo in Rochester. Perhaps one of the more established injectibles like Reclast would be a more predictable option for you. It could reduce the impact of prolia rebound and maybe bridge the loss you are experiencing. I am sure your doctor is knowledgeable but the fact is there is very little data on these drug interactions because they are too new and even the science is not fully understood. A second opinion is useful to help you make peace with your direction. The more you combine these drugs the more complex the predictions and potential interactions. You need to know if there is a strategy to get off the prolia before 5 shots if possible. That is when the rebound ( bone loss) becomes a serious issue. The rebound is most substantial in the spine. Truthfully the medical profession is in uncharted waters on this subject.
Yes I'm trying to get a 2nd opinion at Columbia Medical Center. The Mayo Clinic referred me there. It takes 2 weeks after sending medical records to get the appointment. Also lined up a REMS scan to compare to the Dexa in case there was an error in the Dexa.
Thanks…how long have you been on prolia as I think you have to start right after evenity…did you have the vertebrae problem after Evenity or during Prolia? I have 4 fractures..last lower back silent fracture had intense pain..I was not on meds last August
My next shot after my last month of Evenity was Prolia. There was no time in between without a drug. I had a dexa scan after 1 year on Prolia . After Evenity my spine increased bone density by 15%. After 1 year on Prolia my spine decreased by 12%. I'm still on Prolia ( my 3rd shot) because it worked in other areas. I don't know nor does my doctor know why there was such a huge decrease in my spine. He said it was very rare. I'm still waiting for a second opinion on adding another medication to Prolia. Are you deciding whether to go on Evenity and deciding what follow up drug to use? This whole guessing game is so frustrating since we are all different and react differently depending on our chemistry etc.
Yes; the guessing game is a bit much! I actually got brave and asked my endo if she does any outside reading on the latest studies…as I started Evenity with her ..( she said my spinal back was the worst she’d seen..uhm thanks I guess ?) She did say she reads a few articles a week…I suggested the Canadian website on as I thought it was better than the American one…She did say I’m sure it is!
She re: Reclast after Evenity …and I’m not sure if it was because of my fears of prolia or not…I think it’s a one shot per year…( but you can do nothing then if you have a bad reaction!!!) gah !
Hi I just discovered a YouTube video from a prominent doctor in the United States from Massachusetts General Hospital. I couldn't copy the link but you can type in Dr. Ben Leder and Combined and Sequential Approaches to Osteoporosis Therapy.
My endo said his preferred regimen for ME would be Evenity, Reclast for two years, then Prolia for...well maybe he had hopes I wouldn't live that lobg and he wouldn't have to answer that question? So, just affirming what you said. 🙄
sorry that's happened. it's of interest to me. my Mum was on prolia, and for 3 weeks was on <similar to tymlos>, at the same time. an official study of prolia with forteo is by 'Leder 2015 Lancet', if you search that. but teriparatide's different to abaloparatide.
the gains after something like 1 or 2 years of that were greater than either alone. no data on if risks of breaks are decreased though.
but in your case, it follows evenity, when in the study there wasn't evenity preceding the prolia.
it would be interesting if they customised the doses of the forteo.
That was helpful, thank you. I had read the article but always like to hear from a live person about their experience. What medication did your mum go on after the 1 or 2 years of the combination of medications?
Gosh, I'm sorry to hear about your experience with the vertebra test results. That must be discouraging. My last vertebra scan showed my T-score is -2.6 on my REMS scan. I'm not taking any drugs but am looking at diet, exercise, sleep, stress reduction, and so on to see if I can improve my bone health. Also, I was afraid to do weight bearing exercise but don't feel that fear is justified. Dr. Doug Lucas on his YouTube site, "Optimal Bone Health," heartily recommends weight bearing exercise after consulting with your physician. You might wish to check out his YouTube channel. I put a link to it below. Also, I'm glad you're looking to get a REMS scan. As you know, it's not covered by insurance unfortuately but I'm glad I got one. It seems to be much more reliable as a test than the DEXA. You can find a YouTube video on the REMS test by putting the video's title in the YouTube search box. The title is "New Osteoporosis Technology: Understanding Your REMS Report for Future Stronger Bones".
I agree with you. -2.6 is not bad. Exercise, diet etc is definitely worth a try. Drugs should be a last resort.Thank you for your thoughts. I have an appointment for a REMS scan next week.
You're welcome. Glad to help. By the way, you may wish to check out a book I found helpful, The New Bible Cure for Osteoporosis by Dr. Don Colbert, MD. It has good medical information, and Dr. Colbert also speaks from his perspective as a Christian on trusting in Christ for encouragement and healing in the midst of having osteoporosis. When I went on amazon.com and ebay.com today, I found some copies. (By the way, Dr. Colbert says he didn't want to use the word "cure" in the title for his book because he thought that was an exaggeration and was simplistic. However, he previously published a book titled The Bible Cure for Depression and Anxiety, and his publisher wanted him to keep the word "cure" in the title of this and his other books in this series.
Oh my goodness, I am so sorry you are going through this reversal! I'm on Tymlos now for 9 months, so I have no experience changing meds or coming off one. Your doc wants to add Prolia to Tymlos at the same time?? Prolia is a very scary drug to me, I simply cannot risk my legs having fractures, I'm at 10 in the spine right now.
Wow 10 in the spine! I'm sorry to hear that. I hope that Tymlos can build you up again. I wish you all the best.Do you have difficulty walking or any pain?
Walking is fine now, ups and downs. Lots of pain in the torso with the thoracic fractures. Still have two more to stabilize with kypho, in the lumbar. I'm fused from L4 to tailbone, so those are tricky. They are still painful, as I have nerves impinged, and 7 discs are moderately rupturing. Surgeon says Tymlos has helped, he looked in last kypho, said the bones are improved. I've been 15 months on this fracture path...I'll be thrilled when they all heal and the pain stops!
I am so sorry that you are in so much pain. If you don't mind me asking I have so many questions. Please don't feel obligated to answer. The doctors don't seem to know much. When and why did the doctors decide to fuse L4 to tailbone and perform kypho? I'm concerned about that area because I have pain there toward my side and in my torso when I sit too long. I find that if I stretch out on a recliner or bed the pain eases within an hour.I spoke with a surgeon who told me he couldn't do anything for me since my bones were too weak. Are you satisfied that the kyphoplasty and fusion were an improvement to any degree? It sounds like you are still in pain waiting for bone healing.
I had kyphoplasty felt great after was able to stand straighter. Then went back to severe pain. After a scan dx with additional spinal fractures. Apparently this is very common. We all know age and history varies. In my case decision to have a khyphoplasty was not my best decision. Hope it works for you. I did not fall only signal was the horrid pain. Best to you.
I'm so sorry to hear about your experience with kyphoplasty. Yes it is common to have fractures in other vertebrae. The surgeon that I went to said he doesn't do that procedure for that reason. He recommended metabolic treatment. I'm on Prolia and probably will stay on it permanently.
Would you be willing to share your t-scores after your year on Evenity, and then what they were/are on Prolia? It's hard to get specific numbers online for anything, at least, I don't know how to find them.
I was prescribed Evenity too but insurance denied it. I ended up taking a few doses of Fosamax, split up, over late spring, then again in late summer, just so doctors wouldn't be mad at me for not being compliant when I wanted them their help. I had my first DEXA post-diagnosis last week, after doing everything I could afford to do/that my body would allow me to do (my spine seems to be collapsing, too,) for this last year, and I was amazed that I did actually see improvement! (From -3 3, -3.5 in my hips to -3.1, -3 4, and from -4.6 in my lumbar spine to -3.9. 14.6% improvement on that one. I'm telling everyone--I'm pretty excited! Sorry!) Doctor will probably say it was those 9 doses of Fosamax but I don't think I took enough for it to be THAT significant. And even with improvement, I'm sure the endo will push drugs: he's saying reclast for two years, then Prolia, since I can't get Evenity. I would rather not start drugs at age 62-63, especially if I'm getting results without them, so am looking for ammo! Thank you!
Hi those are great results. The problem with drugs is that once you stop taking them the increases go back to baseline. I understand your reluctance.Here are my scores after Evenity for a year and then after Prolia for a year:
After Evenity ( no meds before Evenity)
Spine - 5.2 from -5.8
Left neck femur - 4.3 from -4.4
Right neck femur -4.3 from -4.6
Total left femur -4.5 from -5.0
Total right femur -4.6 from -4.8
After Prolia
Spine -5.7 from -5.2
Left neck femur -3.9 from -4.3
Right neck femur -4.1 from -4.3
Total left femur -4.2 from -4.5
Total right femur -4.4 from -4.6
No one can tell me why the t score in the spine went down and all others went up.
Wow, when I first saw your post I didn't realize there were so many responses. I don't know much but that person with the -10 in the spine takes my breath away. Makes your scores look great!
Either way, I sincerely appreciate your sharing your numbers. I am very sorry for your fractures and that going the natural route didn't yield good results. I hope you will keep us updated on what you decide to do and how you feel. God bless!
Thank you for your reply. After much worry and visits to 3 separate doctors including 2 endocrinologists and a chiropractor it seems the concensus is that it's difficult to get an accurate reading on a spine that had fractures and is not in the same position on each reading. My spine seems to be moving left over time. All said not to worry. I choose to believe them since I have no other choice and that belief reduces my anxiety. I've had ctx and other blood tests indicating that Prolia is working for my bone turnover. So I'm staying with Prolia.
I’m on Evenity too and very worried about the follow up drug they will suggest…When I asked the doc said Prolia or Reclast…and I said I’ve read bad things about Prolia..I don’t really want to go with that one. I’m green on Reclast too so, so wondering if anyone here has followed up with Reclast?…I think someone also mentioned..either Fosamax or Forteo as a follow up and I can’t recall. I note that the drs aren’t as frightened about the follow up drug as the patients!….I would also question the double meds of Prolia and Tymlos….as Tymlos is similar to Evenity…( I had a choice and chose Evenity) The follow up drug is supposed to hold the gains made with Evenity. So does Tymlos do this? Ask for studies, perhaps?.. I would like to learn and know more too…
I also had spinal fractures. After 12 months of shots
No new fractures but no improvement. I had three episodes of fractures. Had kypholasty. Still had fractures. If you have no new fractures I would stay on your present path. Third time with fractures with severe pain I am hunched over. Extremely debilitating. Possibly get second opinion. Wish I knew enough as this progressed. Wish you well. Severe osteoporosis is no joke will ruin your life.
I agree it can ruin your life. I think it's different for everyone though. I had 4 fractures before taking Evenity and then Prolia. That said this is my second year on Prolia. I have had no other fractures but do have to say that without my husband here to do heavy lifting like the laundry, lifting grocery bags etcetera I would not have been so lucky. I'm extremely careful about how I move my body, in particular turning over or getting out of bed. I never twist but instead turn my entire body in one move. There are other ways to move that can save you. Margaret Martin in Canada is on the internet. She's a physical therapist specializing in osteoporosis. I had one session with her over Zoom. It was eye opening for me. I used to be very active twisting, turning and exercising. Now I only walk for as long as I can. I don't do anything that will jeopardize my back. By the way, I'm not saying this is a cure. I think it has helped keep me safe from further injury. Wishing you less painful days ahead.
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