Struggling with making an osteoporosis treatment decision

Thanks

I am switching from Prolia to Evenity--why--because I have experienced hair loss, hair breakage and the texture of my hair has totally changed. Also, I have lower back pain that I never had before. Once you start Prolia you are on it indefinitely, whereas Evenity is a 1-year regiment on monthly drugs.

Thanks, that is the way i"m thinking.

Good evening @ericsr, I also would like to welcome you to Connect in addition to @colleenyoung. You have legitimate questions about the products that can help with osteoporosis. I have lived through the last few years with similar "wonderments", my word for the often mysterious information about side effects.

First of all, Yes, Evenity builds bone. Prolia does not. What Prolia does is protect the bone that you have carefully built. In fact, Evenity is the only current osteoporosis medication that does both......build bone and then protect it. Here is another source for you. Evenity and Prolia are products of the same company......Amgen. If you would like, you can call them and talk to one of their team of medical professionals about your questions and concerns.

Prolia, on the other hand, does not build bone. And it is not a medication that you can stop for any reason without risking fractures. My personal experience with Prolia was rather frightening because of joint pain and some jaw pain. I asked for a consult from my endocrinologist at Mayo Clinic so that I could leave Prolia and move to a safer option.

Although previously I had reactions to bisphosphonates, he felt confident that it was because the dosage was given every six months and that large dosage was too much medication for my body to handle well. He prescribed weekly pills of alendronate and I am very satisfied with the outcome.

There are answers to be found. It does take time. Instead of Evenity I started with Tymlos and did daily injections for two years. That also worked well and I am glad that I was able to take advantage of the bone building that I received from that medication. Also, remember that Tymlos is a daily dosage....not an every six months dosage which may also work better for you.

@windyshores is also finishing her two years of Tymlos. She found the "click" option helpful. With that capability, you can start with 1 or 2 clicks and work your way up without unnecessary exposure to side effects.

Please ask any questions that you have. We have an experienced group here which can be helpful to everyone. It is all about sharing on Connect.

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May you be safe, free, and protected from inner and outer harm.
Chris

Hi, my name is Christi. I am new here and to the osteoporisis community. I am overwhelmed like many of you. I do appreciate the candid posts in this forum and am comforted to know I am not alone. I was informed of my results less than 2 weeks ago. I was shocked. My insurance doesn't cover the BD test until the age of 65. I am 52! No history of this in my family. Like many others on this site, I live a healthy lifestyle, including exercise and diet. I rarely drink a soda or alcohol, and I have never smoked. My only 'vice' is chocolate. My OBGYN recommended Boniva (due to dosage 1X month), and my PCP prefers Fosamax due to more proven clinical results in preventing hip fractures. There is a risk of atypical fracture in taking the BPs, so I was wondering if anyone on this Forum experienced an atyplical fracture while taking BPs?
Thank you

Hi Chris, did you initially treat with the the BPs every 6 months and then move to the Tymlos? I am wondering about your course of treatment.
Thank you for your post.

I think it helps to remember that osteoporosis is along a spectrum. Some have the diagnosis with a bone density of -2.6 and some are at -4.0 or worse. Treament will vary along this spectrum.

I chose Tymlos for two reasons: the dose is adjustable so I could ramp up and let my body get used to it, and I was told I could take Evenity after Tymlos but not the other way around.

I would add that without the anti-resorptive properties of biphosphonates, Prolia and to a lesser degree, Evenity, Tymlos builds quality bone. I feel much stronger after a year. But I am sure I still have osteoporotic bone density, so bone quality is important to me.

Forteo is now allowed for more than 2 years and maybe the same will happen for Tymlos. Though effectiveness is greatest for the first 6 months- a year.

I end Tymlos in April 2023. If my gains are not enough, for now, I would go on Evenity. If my gains are good on Tymlos, I will do a partial dose of Reclast (with hydration and slow infusion) and then take a break if monitoring shows I can.

X

Hi there,

I was diagnosed with osteoporosis when I was in my early 60's, with a BD score of -2.4. I took Actonel for a number of years, then switched to Fosomax because when I changed insurance plans Actonel was no longer covered. The first time I took Fosomax I had a GERD reaction, and never took it again, and have taken no medication for at least the past 12 years. I'm now 79, and last year a new PCP ordered another BD test. The result was -4.0. I don't smoke or drink, I eat well and exercise quite a bit - walking, mucking for horses, and doing online bones and balance classes. My PCP recommended going back on Actonel, and had me consult with an endocrinologist who recommended one of the infusions. I did a lot of research, and decided that among other things I was unwilling to take a medication that could itself cause fractures, plus I have dental issues and compromising my jawbone etc. is not a result I'm willing to risk. It is not a given that I will ever get a fracture. I am way too medicine-averse to take any medication that, as others have pointed out, can either cause fractures or has an unproven track record. I know my decision would not be approved by many medical professionals. but I also know that the drug industry is not always to be trusted in terms of putting the welfare of patients at the top of its list of priorities, and doctors can sometimes be compromised by their relationship with pharmaceutical companies.

@mrossi, you sound like I did just shy of a month ago. I was literally waking up crying in the middle of the night, so overwhelmed by this completely shocking diagnosis and daunting options. Like you and all most of us here, I was very active, salmon 3x+ per week, good sleep, lots of water, etc. As the result of a persistent and very severe covid cough this summer, I finally went to the back doc early Sept for a nagging back pain from the cough. MRI and Xray revealed two fractured verterbrae. I was put in a back brace for 3 months and sent on my way. After that shock wore off, I INSISTED on a Dexa (bone density) scan despite being told "not until your 65"...I'm 61. That scan revealed osteoporosis at a -3.0 level and it completely sent me into a whirlwind. My doctor sent me to an osteo PA who immediately walked me through what life will be like. She prescribed Fosamax and told me to fill it but don't take it bc it wreaks havoc on stomach (I have reflux and IBS) and esphogeal issues. You have to fail on the bisphosphonates before any insurance will allow for Forteo or Tymlos which is a daily self-injection that you stay on for two years. After that, a second opinion osteo PA advises Evenity injection in her office 2x per year...I haven't gotten past that.
My advice to you is to breathe: we have this and while I may or may not have a family history, the fact is this is where we are. We could have such worse diagnoses (this is what got me through the initial shock; its not cancer or MS, thank God!) and these drugs appear to have sound evidence on their efficacy and results. Probably like you, I am not a meds fan. I rarely even take an aspirin if I can avoid it. I did tons and tons of research, went through swings of emotion (I'm divorced many years and going through this alone has been tough; my daughter wants to know all about it so she can prepare and she's only 30!). Bottom line is women's healthcare is lacking and this situation woke me up to that. It's also humbling and sobering as I feel 47 but I'm not and now feel I do have to slow my roll but just a bit.
My advice would be to seek a doc you are comfortable with, listen to podcasts, go to forums like this and I used Inspire dot com (this site won't let me post a link) which made me really feel like we are all in this together.
I began Tymlos 5 days ago after hemming and hawing. I'd recommend it because you can control the dose which I only found out on this forum last night. You click the pen and inject (its honestly not bad you don't feel the needle bc its the width and length of an eyelash). You click until you hit 80 which is the full dose. I had 5 nights of no sleep, foggy headedness and fatigue and no appetite. Last night, I took it a bit earlier and stopped short of the full dose. The side effects were there but much lighter, my sleep significantly better and I woke up early this morning (like I used to) and did yoga and feel like my old self.
Exercise and diet are also key. Be sure to immediately get on Vit K2 (the M4 and M7 are important, M4 helps the transport of new bone cell), collagen (I use Solgar Hylauranic Collagen tablets--did it for my vanity for my skin and giddy to know its so key for our bones), calcium, Vit D3. Walking, I am told, is the best exercise, followed by a mini trampoline where you can just bounce for 10 mins and it = a 30 min run and has been proven by NASA to boost bone building. Apparently, astronauts lose bone density bc of the lack of gravity. Of course, weights are also key, though we are no longer permitted to lift more than 20-25lbs and that's fine with me.
I do hope this helps you and I'll keep checking the posts. The other forum link I gave you allows you to 'friend' a person and I met a lovely woman out in Washington who is 53 and in the same boat as us. Hang in there, friend, and have a Happy Thanksgiving. We've got this! xx