Hi everyone,
Has anyone tried Evenity. My spine is worse than my hips but my doctor likes the results that this drug has given people in both areas. It is a relatively new drug so I am not as comfortable with it as compared to Forteo or Tymlos. For those who have tried Forteo or Tymlos, did they help with the bone density in your hips as well as the spine?
Thank you!
Hi there, I have been on Tymlos for almost a year. I had my bone density checked after about 4 mos on the drug, and both my spine and femoral neck bone density improved. My new endocrinologist did say that she would have recommended I take Evenity (I wasn't seeing her at the time I started Tymlos) because it builds bone and also reduces bone break down. I remember that Evenity cannot be taken if you have cardiovascular issues. Hope that helps a little. Best of luck
Hi Oscarbuggy, thank you for your reply! I am glad to hear your bone density has improved in both the spine and femoral neck. Evenity is supposed to be great but there are no long term studies. I read that may cause degenerative joint problems later on but that is just speculative at this point. Did your doctor specifically choose Tymlos over Forteo? I understand they are the same type of drug....just wondering if she had a reason if so.Thanks again!
There is a time limit, like with Forteo (two years), for Tymlos. After that I believe with both medications you need to take another medication to "lock in" the improved bone density,
Thank you! Evenity sounds great and I think is only for one year but it is relatively new so I wasn't sure about the long term effects.
Evenity is brought to us by the people who brought us Prolia, the medication implicated in serious rebound osteoporosis when discontinued even after one dose (they used to say one dose was okay, but not so sure now), So if you take Prolia you are signing yourself up to indefinite treatment, or if you have problems with it, having to take one of the other medications presumably rejected when the treatment was being selected. I don't know if Evenity is the same and maybe no one knows yet as it has not been in use long. It took a while before the problem with Prolia was known by the general public. Prolia also has an effect on the immune system. So, frankly, I'd wait a while before accepting another drug in the same class.
Thank you so much for that great information! Sadly, a lot of doctors are pushing Prolia. I am on the side of using less risky meds and as little meds as possible. Evenity is too new and your information helped shed some more light on it. My numbers are pretty bad in the spine (3.8) so the doctor thinks I should definitely take something to build bone first and then something to maintain it. This whole process with the doctors and getting clear information has been a struggle. Not to be a downer, but to me after listening to the doctors and doing research, the diagnosis itself feels like a death sentence and can be pretty overwhelming. I don't know if you felt that way when you were first diagnosed but it is a lot. Thanks again for your help!
Fortunately I was in the low bone mass category, never osteoporosis, but I was told osteoporosis and for several months believed I had it. Did a lot of reading at that time. You can read my story here:
healthunlocked.com/pmrgcauk...
It's good that you are doing your research so you can, with the help of your doctor, make the best choice for you. Good Luck!
Your story is so inspirational and very informative HeronNS! Thank you so much for sharing it! I am going to look at the sites you recommended. I too love Tai Chi! The last few years have been challenging. I have muscle imbalance issues (piriformis syndrome, SI joint dysfunction, etc) and haven't been able to walk as much or exercise a lot so that has taken a big hit on my bone density. Still recovering but praying to get fully back to my old physical activities. I have been working with a nutritionist and your approach sounds a lot like hers so I think I'm on the right path there. God bless you and continued best wishes for your journey as well! Your writings have been very helpful!!!
Thank you for your kind words. I was so inspired by my friend who told me about Vitamin K2, etc. I do wish we were all given more guidance about maintaining our bones when we are still young - you know, like we are taught the dangers of smoking, the importance of a good diet, exercise, the signs of stroke or heart attack. But no one ever tells us the basics of maintaining good bone density! Best wishes to you on this new adventure. 
I totally agree! I am trying to teach my daughter about it early so she won't have to go through this. I have friends who have never even heard of osteoporosis. I actually don't think the doctors totally understand it. In the meantime I feel so blessed to have people like you and those in this community to help spread valuable information and to support one another. It is a battle. Keep up the good work!!!
Your post is a year old so you probably won't see this response, but that's okay. I don't know if others are like me in this, but just having a place to say the quiet part out loud helps.
I didn't know how to feel about my diagnosis when I got it, but I'd already been having so much pain in my back, already had had to come to terms with a whole new way of being (I'd been a runner, didn't start running until I was 49, but it had gone a long way to convincing me I COULD overcome, I COULD push through pain, I COULD achieve impossible physical goals (I ran my one and only marathon at 53,) but my back was deteriorating so fast and the accompanying pain was so severe that it seemed I had to let that idea go, not just let running go--if that makes sense. Like my body was full on defying me, full on spitting in my face.)
Still, osteoporosis wasn't on my radar and there was still this glimmer of hope that I could get better. I didn't understand my numbers at first either, (-3.3, -3.5 in hip/femoral head, -4.6 in lumbar spine,) and no one (my care providers) seemed to take my situation seriously, so...?? They STILL aren't, even though I've now proved I've had multiple fractures (I went to urgent care and asked for x-rays,) but at least I did get a referral to an endocrinologist. (The referring physician told me "They're just going to tell you you're doing everything you can, though." Ultimately, he was proved correct.)
The endo prescribed Evenity, said my case is severe, insurance would surely cover it, but...they didn't. So currently I'm in medication limbo. (I did start retaking the fosamax that was prescribed by default.) But even with the endo I got the impression that my case is pretty hopeless. I'm relatively young, (62) and plotting out a course of drugs to cover potentially decades is...daunting. I've already started the fracture cascade in my spine; from the sound of it, even with the "best" drugs, it's going to be hard to stop it. One doctor mentioned kyphoplasty, but from my understanding you have to catch the fractures early, and he said x-rays are actually bad at catching them early, but did he suggest MRI or (??) Nope. My upper back is already moving into "hump" mode, lower back is also more curved than it should be. I'm 62, not 90, I theoretically still have productive years, but it's feeling like they've already written me off. They even seem reluctant to help me with pain management.
So yeah, now I AM starting to feel like it's a death sentence. Maybe I won't actually die...if I just sit in front of some screen and move as little as possible, I can probably prevent fractures? But that will impact my health in other ways, and exercise is for mental health, too.
I'm nursing a fracture as I write, somehow my ribs are also impacted, and I have to go to work today (I do hair...:-O) and even though I only work a four hour shift, I will be in blinding pain at the two hour mark, so my depression level is high at the moment. As I heal, I'll start to feel hopeful again, but hope really is on a day to day basis now.
I guess that's good? We're meant to live our lives now, not wait until some future moment (retirement?) to start living, and I think we ARE kind of doing that. My husband, Mr Thrifty, is shifting his position a little, wants to do fun things while we can...within reason of course. I'm considering retirement...I don't make that much money anyway, (still, the little I bring in gives me a little more room to try not covered by insurance treatments,) but in my job...I'm not 100% sure the job didn't cause my thoracic fractures, and even if it didn't, it definitely doesn't help them. If I could find something else, fine, but if not...I mean, do I really do my best work when I'm in that much pain? (For what it's worth, most older (40+? And even many younger,) hairdressers are dealing with some sort of pain and the later in the day you see them, the worse it's going to be. My advice would be to schedule early.) No. And do I want my life to revolve around pain/pain management? No.
My new PCP also said, "I just can't understand why you're taking this so seriously...it's not like it's cancer or something." But that's where he's wrong. It IS like cancer. Potentially manageable if caught early, potentially literally will kill you if not, and unlike some cancers, there's no remission, no interest or understanding of the mental, physical, emotional toll it takes, and basically no one cares. So yeah, I'm taking it seriously.
Hope you are actually doing well, if you see this.
Oh my gosh, "ditto" to everything you said! My numbers are the same as yours and I'm dealing with a new spinal fracture (& rib pain). Currently trying to find a new doctor who actually cares about my future and is well versed in osteoporosis treatment options.
Forteo, Tymlos, or Eventy?? Which one is best? They all have black box warnings...
I'm a new grandma at 64 and SO disappointed that I can't pick up (or carry) my new grandson. I want to address my osteoporosis NOW so I can live life!
I'd love to know what you decide to do.
Prayers for you.
Thanks, MidwestMama! And, I'm sorry--I truly feel your pain. I don't have grandkids, but I picked up my manager's 1 year old one time and was like, "OMG, I really can't pick up kids!" It's impressive how impactful osteoporosis is when you've crossed over into the fracture zone.
I see my endocrinologist next Wednesday; I've only seen him once before, and that was mostly for his medication recommendation. No idea what's going to happen at this visit, but I did feel he had SOME sense of the unfortunateness of my situation.
Have you had any kind of physical therapy? When did you get your diagnosis?
I started aqua therapy this week. It was pretty crazy...I thought we'd use a weight belt (I've never done anything but laps in a pool,) based on online researching, but she seemed to believe my own muscles should be sufficient to keep me vertical in shoulder deep water. That by itself proved to be a pretty significant workout, but I sincerely felt no strain, pain, stress on my spine at all. My upper back is so bad (weak) now that even a 45 minute walk will leave me going "must relieve pain!" (Trekking poles are very helpful though; work out my upper back some and correct my posture enough to allow me to walk longer.) I hope the pool work will help me get strength back, but sadly it's hard to get into this therapist, so it will be awhile before I know.
What kinds of things are you doing to address your situation?
Hi.I'm not doing any PT at this time. Waiting for my recent fracture to heal.
Plus my current Dr said that a reading of -4.6 in my spine is really serious and simple movement will cause a fracture. Right now I'm just walking.
Currently I'm on a short course of Calcitonin nasal spray. After that I need to decide between Forteo, Tymlos, or Eventy. As I said before, they all have significant side effects so it's hard to decide. Plus I hate to take drugs! I've always leaned towards natural health but I guess it's time for the heavy-duty drugs. Keep me posted on what you decide to do and I will do likewise.
Take care!
I feel like you're lucky your doctor said your situation was serious. I probably already said this, (so many different threads here,) but my primary care guy actually said, "I don't understand why you're taking this so seriously," (and, my paraphrase) "It's not like it's cancer!" Nothing like minimizing for a minimizer who maybe got to this place because she was minimized and dismissed it herself.
I'm sitting at the endocrinologist's right now...waiting to see if he upgrades me from fosamax. I had car issues, had to drive my son's car (fortunately he was home,) but couldn't adjust seat; manual transmission, you gotta extend that left leg, right? So I'm squirming half sideways to reach it. Got some good practice with it parking garage, literally ended up probably a quarter of a mile away from my destination, now 8 minutes late, so--I ran. That's how my life do. No wonder I'm all wracked up. (Fortunately, didn't feel anything wonky--probably wasn't far enough to do damage--but still.)
As I drove up here I pondered further ironies: my husband is very thrifty and I get it, I've never been a consistent contributor to the household finances, but...we're not suffering, either. The problem with my car is that the magnetic, whatever it is. keyfob is broken, but rather than getting it fixed, or getting a new one, my husband put it back together. And it has worked, 50% of the time, but you have to remember to hold it just so, ir it will come apart again. This morning I forgot to hold it just so and it crumbled in my hand, losing what no doubt is a critical piece.
Maybe it's not irony, maybe it's a metaphor, or both, but...here we are, getting older and frailer, but rather than getting newer, more reliable stuff, our stuff is getting older and frailer too, and in some cases, actually may make our existence that much more precarious.
We're going to have to do some thinking, at some point.
Have a great day!
"Nothing like minimizing for a minimizer who maybe got to this place because she was minimized and dismissed it herself." Exactly!!
I believe I've gotten to this point because drs didn't take it seriously, and I didn't either!
May I ask what you found out at your endo appt last Wed? Any new info about osteoporosis drugs?Thanks.
Hi! Thanks for asking!
Here's what I learned:
1) He didn't realize I hadn't been able to start the Evenity (I didn't know I needed to tell him,) so he was a little surprised, said he wanted to try to appeal because he does like to use it first and it is "medically necessary". But if we don't succeed, he wants to go with Reclast. Not sure how I feel about that. I think his reasons had to do with fracture reduction.
2) He seemed almost sincerely concerned about two confirmed fractures in my upper back and one presumed. They'd not been ferreted out when I saw him in August.
3) Though my calcium level (both blood and urine) isn't officially high by my reckoning, he seems to think they are. Wants me to either take a particular diuretic that (so I read online) causes more calcium to be reabsorbed, somehow. If not that, less protein, or less salt. My blood pressure already trends low-normal, and both reducing salt and the diuretic may reduce it more. He said US women eat too much protein. I have already cut out processed food for the most part (where--my opinion--most salt creeps in.) I like salt, though, and in my otherwise bare bones diet, I can't quite bear to worry about not eating it. I have tried to eat more protein recently because I read we need it, but...I could cut back. I decided to try the diuretic because of the possibility of "transient weight loss" which is a dumb reason to do it, but...I've fought my weight all my life, I'm going to take transient benefits where I can get them. He said it might make me feel light-headed, but, I already experience that often (low blood pressure!) I actually felt floaty today--second day on it--kind of enjoyed it.
4) He didn't say anything about why my calcium might be high. I actually had a big bump in my vit D level between May and August (44 in May, 107 in August--the effect of changing up my diet? Taking the D with cod liver oil? Don't know. ) I did read that high D can cause high calcium, but he didn't mention it and I guess I wanted to just go with him. Kidney problems can cause it too, as can hyperparathyroidism, of course, and our friend, osteoporosis. I don't think it's possible to have high D levels with hyperparathyroidism, but I still kind of wish he'd dig into that a bit more. It just seems like there should be something causing this besides...genetics. My mom's osteoporosis wasn't even that bad.
That's about all. Not much, really, but I guess it's a process?
How about you? Anything popping in your world?
Thanks for the update!It's an ongoing puzzle, isn't it? I keep wondering, too, if I have some underlying reason for my downward turn/fractures this summer.
I'm going to order some labs through Walk-in-Lab, that my PA doesn't order.
As much as I hate taking drugs with major side effects, it sounds like a spinal reading of -4.6 warrants it. It's my understanding that we need one of the anabolic drugs (Forteo, Evenity, Tymlos), followed by something like Reclast to lock in the gains.
Hmm. I've also read that women don't get enough protein, so I've been trying to eat more...?
I rarely eat processed food because of the high sodium.
I do salt my home-cooked food with Himalayan salt. It's important to get the trace minerals.
According to many health online sites & books, a Vit D reading of 107 is too high. Do you get heart palpitations?
I think Dr. Mercola says optimal is 50-70.
I'm still in limbo regarding a new dr to manage everything, plus which drug I'm going to go on. I turn 65 next month so I'm in the throes of navigating Medicare. It's so complicated!!
Enjoy that "floaty" feeling.
Hope you have a blessed Thanksgiving.
I have a question about this "locking in" effect. My endo prescribed alendronate but I had to quit it because of digestive tract issues. Then he prescribed a zoledronic acid infusion. He's reasons for going with zoledronic acid are- I'm youngish (diagnosed at 50)
- my numbers aren't great (started with lumbar t-score of -3.9).
- Bisphosphonates have been around longer and he didn't want to prescribe newer meds
- He said I could have 2-3 zoledronic acid infusions (over 2-3 years)
- Who knows what future advances might be made.
I had one zoledronic acid infusion in November 2021. If I were to have another infusion and then 5 years later try Evenity or Tymlos, would I be able to then have another zoledronic acid infusion to "lock in" the improvements made by the Evenity or Tymlos?
I'm not planning on having another zoledronic acid infusion this year. I'm planning on potentially trying HRT and simply working on my bones naturally. But if one can only have 2-3 zoledronic acid infusions, what drug would I be able to use if I exhaust all of my zoledronic acid infusions as my endocrinologist is currently suggesting, if I were to use the Evenity or the Tymlos.
Hope this makes sense.
The zoledronic acid is also used for cancer treatments and in that case I believe there is a limitation on the infusions. Perhaps the dosage is much higher? Had never heard that there is any particular limitation for osteoporosis treatment. It is a bisphosphonate, and as such it remains in the bones and does not cause rebound bone thinning if it were to be stopped. That is as far as I can go. Your questions are complex and can be much better answered by a medical practitioner. I know in the UK one can telephone the Royal Osteoporosis Society. Perhaps Mark_ABH can direct you if there is an American equivalent?
an endocrinologist i have corresponded with told me of a sequence of bisphosphonate --> teriparatide 18 months --> bisphosphonate
but that's generally speaking, not specific to anyone's case.
forteo must be followed by something else, which you are aware of.
Hi jaqre, for you and others who might be interested, here is a rundown on all the osteoporosis medicines approved for use in the USA. Evenity is under "romosozumab-aqqg," and Forteo/Tymlos are under Parathyroid Hormone Analogs ... americanbonehealth.org/fda-...
I was seeing so many different specialists at the time to try to choose one, I honestly don't remember why the endocrinologist at the time recommended Tymlos over Forteo. Good question for your current doctor!
Yes, I have been picking my doctors brains as well. It is interesting because you get different answers and reasoning depending on the doctor. Thanks again!
Prolia vs. alternative vs. Forteo?
Tymlos after prolia 
tymlos
