Hi everyone,
I'm new to this forum and fairly new to navigating life with osteoporosis. I was diagnosed just a couple of years ago, and I'm now 66. Before my diagnosis, I was fortunate to be in good health and didn’t take any medications. The osteoporosis came as a surprise and was only discovered after I suffered a vertebral fracture and was sent for a DEXA scan.
My initial bone density results were quite severe: a T-score of -5.5 in the lumbar spine, -3.8 at the femoral neck, and -3.9 in the hip. I recently completed a year of Evenity with no side effects, and thankfully, there has been some improvement. My most recent scores are: lumbar spine -4.8, femoral neck -3.6, and hip -3.3.
Now, my doctor is recommending that I start Prolia. I'm struggling with her comment that I will likely on it “for the rest of my life.” That really gave me pause. I’m doing my best to support my bones through diet, supplements, and regular weight-bearing exercise, but I know medication is likely necessary to preserve the gains I've made and help prevent future fractures.
Is Prolia truly the only next step? And does it usually mean a lifelong commitment? I’d really appreciate hearing from others who’ve been down this road — your experiences and advice would mean a lot.
Thank you so much.
Hi @dgtex . I'm also 66 & just joined this forum today. I just started seeing a rheumatologist to ask about continuing Tymlos & he wants me to do a year of Evenity instead. He also suggested a couple of years on Prolia after Evenity & then a year of Reclast & then I should be good for the rest of my life without osteoporosis drugs. My primary care doctor had told me that if I start Prolia, that I could never stop using it because if I did, I WILL break my spine. Her words. She then added that if I stopped Prolia I would have to immediately go on another medication to keep me from breaking my spine. I told that to the rheumatologist & he said that my spine would be safe after the year of Reclast. He's giving me a month to make up my mind about Evenity. I'm mostly concerned about the stroke risk. Good luck with whatever you decide.
Hello chittle, thank you for the info.
My scores are so bad that my dr says I will need to be on something for the rest of my life, I already have fractures and have lost almost 3 inches.
I'm concerned about starting Prolia. I think I'd rather have at least a year of Reclast to use that time to inquire with a few more doctors. I'm still looking at meds but I have to make a decision soon, feeling a lot of pressure.
You could do fosamax for a year or two then go back on Evenity. That would be best. Otherwise, Prolia sounds right until some other medication comes around.
I would recommend asking your provider about Reclast. I am on Evenity now (6 mo in) (no problems with it). I was talking to my doctor about "what next"? He suggested Prolia but I asked about Reclast (several reasons I don't want to take Prolia now-found on this forum) and he said okay. So as of now that will be my next drug. I don't know if your situation would warrant it but it wouldn't hurt to ask. I would sit down and ask your provider to map a course so you know what will happen (as much as possible). Not knowing makes it easier in my opinion.
Hi @bayhorse - I believe that Fosamax is just as efficient as Reclast at holding onto Evenity gains, but more importantly, Fosamax is less powerful and wears off quicker than Reclast when you stop, giving you more better performance if you ever needed to go back onto an osteoanabolic (Evenity / Tymlos). Now if you are lousy at sticking to the weekly regimen like taking Fosamax, then Reclast might be for you. 🙂
Hello chittle, thank you for the info.
My scores are so bad that my dr says I will need to be on something for the rest of my life, I already have fractures and have lost almost 3 inches.
I'm concerned about starting Prolia. I think I'd rather have at least a year of Reclast to use that time to inquire with a few more doctors. I'm still looking at meds but I have to make a decision soon, feeling a lot of pressure.
Hello again, @dgtex. I've been busy with work & just remembered to start checking this forum again. I sure do hope that all goes well for you. I don't want Prolia either & plan to ask if I can just do Reclast after Evenity. Your plan sounds like a good idea & I understand about the pressure although I'm sure that you feel it worse with your DEXA scores & fracture. Have you made a decision yet?
Hello again, @dgtex. I've been busy with work & just remembered to start checking this forum again. I sure do hope that all goes well for you. I don't want Prolia either & plan to ask if I can just do Reclast after Evenity. Your plan sounds like a good idea & I understand about the pressure although I'm sure that you feel it worse with your DEXA scores & fracture. Have you made a decision yet?
Does anyone have knowledge of taking Evenity before or after tooth extractions and/or knee replacement surgery? My endocrinologist is saying no issues, while websites are saying the opposite. Unfortunately, I need to be on something due to two fractures in the past couple of years, but I also need the dental work and the knee surgery. I'm a mess trying to figure it all out! HELP!
THANKS IN ADVANCE.
Does anyone have knowledge of taking Evenity before or after tooth extractions and/or knee replacement surgery? My endocrinologist is saying no issues, while websites are saying the opposite. Unfortunately, I need to be on something due to two fractures in the past couple of years, but I also need the dental work and the knee surgery. I'm a mess trying to figure it all out! HELP!
THANKS IN ADVANCE.
hi - it may be helpful for you to review the Evenity website with listed side effects then discuss them with your Dr. Both increased joint pain and dental care are listed. https://www.evenity.com/results-and-safety/side-effects
Good luck, d
I have had 2 months of Evenity shots. Third month in 10 days. Anyone have joint pain that wakes you up in the night….like vise grip on knees, and hard to move. Doesn’t hurt when I am walking….
The joint pain pressure accompanied by low pain headache. I too was surprised at the diagnosis bc of exercise etc. I am 75 and concerned about the ongoing rest of your life treatment statements!
What is the common follow up med after the year of evenity?
Yes. I had my third shot last week and am awakened every night with pain in my knees, hips, and elbows and am very stiff on getting up. I have not been getting headaches, though.
I am hoping that it will dissipate as time goes on. I really need this treatment so I will continue even with this side effect. It can be challenging, though. I try to stay hydrated and active although I had to move my exercise workout from first thing in the morning to a bit later in the day due to the discomfort.
I am 64 and have been on osteoporosis meds for 7 years (Fosamax, Tymlos, Forteo). I will likely do Reclast after the Evenity. I am unwilling to go on Prolia at my age even though the doctor suggested it as her preferred option after Evenity. Perhaps when I am older.
Hi @dgtex . I'm also 66 & just joined this forum today. I just started seeing a rheumatologist to ask about continuing Tymlos & he wants me to do a year of Evenity instead. He also suggested a couple of years on Prolia after Evenity & then a year of Reclast & then I should be good for the rest of my life without osteoporosis drugs. My primary care doctor had told me that if I start Prolia, that I could never stop using it because if I did, I WILL break my spine. Her words. She then added that if I stopped Prolia I would have to immediately go on another medication to keep me from breaking my spine. I told that to the rheumatologist & he said that my spine would be safe after the year of Reclast. He's giving me a month to make up my mind about Evenity. I'm mostly concerned about the stroke risk. Good luck with whatever you decide.
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2 ReactionsHello chittle, thank you for the info.
My scores are so bad that my dr says I will need to be on something for the rest of my life, I already have fractures and have lost almost 3 inches.
I'm concerned about starting Prolia. I think I'd rather have at least a year of Reclast to use that time to inquire with a few more doctors. I'm still looking at meds but I have to make a decision soon, feeling a lot of pressure.
@michaellavacot, why would going on fosamax be the best choice after Evenity? Does it work as well as Reclast to preserve bone gains?
You might want to his the reclast discussion group. It’s 48 pages long. Lots of concerning information to be found.
Hi @bayhorse - I believe that Fosamax is just as efficient as Reclast at holding onto Evenity gains, but more importantly, Fosamax is less powerful and wears off quicker than Reclast when you stop, giving you more better performance if you ever needed to go back onto an osteoanabolic (Evenity / Tymlos). Now if you are lousy at sticking to the weekly regimen like taking Fosamax, then Reclast might be for you. 🙂
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Helpful -
Hug
4 ReactionsHello again, @dgtex. I've been busy with work & just remembered to start checking this forum again. I sure do hope that all goes well for you. I don't want Prolia either & plan to ask if I can just do Reclast after Evenity. Your plan sounds like a good idea & I understand about the pressure although I'm sure that you feel it worse with your DEXA scores & fracture. Have you made a decision yet?
Thank you for checking back. I have decided to go with Reclast. I can only hope this is the right decision.
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1 ReactionDoes anyone have knowledge of taking Evenity before or after tooth extractions and/or knee replacement surgery? My endocrinologist is saying no issues, while websites are saying the opposite. Unfortunately, I need to be on something due to two fractures in the past couple of years, but I also need the dental work and the knee surgery. I'm a mess trying to figure it all out! HELP!
THANKS IN ADVANCE.
-
Like -
Helpful -
Hug
1 Reactionhi - it may be helpful for you to review the Evenity website with listed side effects then discuss them with your Dr. Both increased joint pain and dental care are listed. https://www.evenity.com/results-and-safety/side-effects
Good luck, d
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Helpful -
Hug
1 ReactionYes. I had my third shot last week and am awakened every night with pain in my knees, hips, and elbows and am very stiff on getting up. I have not been getting headaches, though.
I am hoping that it will dissipate as time goes on. I really need this treatment so I will continue even with this side effect. It can be challenging, though. I try to stay hydrated and active although I had to move my exercise workout from first thing in the morning to a bit later in the day due to the discomfort.
I am 64 and have been on osteoporosis meds for 7 years (Fosamax, Tymlos, Forteo). I will likely do Reclast after the Evenity. I am unwilling to go on Prolia at my age even though the doctor suggested it as her preferred option after Evenity. Perhaps when I am older.
-
Like -
Helpful -
Hug
2 Reactions