Treating Osteoporosis: What works for you?

IF your bone density is bad, would you consider Tymlos? I am much more leery of side effects with Reclast. The pen needles for Tymlos are tiny and have adjustable doses so you can start low and move up.

I have heard that using Reclast first may affect the effectiveness of the bone-builders like Tymlos, Forteo or Evenity and it has been suggested to me to do Reclast after Tymlos.

I fractured my spine in several places. Tymlos and Forteo build quality bone. I would take a small needle every morning forever if I could have avoided these fractures, which are permanent, painful and disabling.

Respect to you in your decision-making but wanted to share my perspective.

Thanks, Windy Shores. Its soooo hard to know what to do, and it's making me crazy. I've been trying to make this decision for months. My doctor thought it was a good alternative plan, so I decided to go with it. It's one infusion once a year for two years. I have stomach issues and continuous lung issues. For the past year , I've been through three bronchoscopies, 19 days of 12 infusion syringes a day for lung infections, and the list goes on and on
, so I just tried to make the right decision, that would be the easiest on me. Sorry if I'm venting, but it's all too much. You know how it feels when you get to that place? I'm sorry to hear about your fractures. They sound terrible. Well, thanks for your reply. You are really a kind person.

Good evening @mj20 I haven't had a chance to say "Hello". I am the mentor working with this new group, Osteoporosis & Bone Health. I am so glad we have our own group and our own space now. And thanks to you also @windyshores. You truly are a kind and helpful person with lots of experience.

I think I too would run the other way if I had to have 12 injections a day for 19 days. However, I did two years of Tymlos without a whimper. Why? My body can't handle large doses that are supposed to last a month or 6 months or even a year. When I calculate the half-life of the dosage, I realize why my tolerance difficulties come in the first half. I am simply way overdosed. So daily injections (gentle, minimal ones) are perfect for me.

Good luck with your decision outcome. It is great that as we live longer, we now have medications that help our bones stay strong. Please drop in and share how you are doing. That is the way we can all help each other.

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

Thank you so much, Chris. Maybe I should have done the Forteo, as she had originally recommended. The decision is way to big for me! You do make good sense with the large dosage at one time. . Did you try having an infusion of Reclast? I'm so upset with all of this.

@mj20 like Chris I am sensitive to meds and I am small. My endocrinologist wants me in the hospital office if I ever do Reclast, and he wants to try 1/4 dose first. The thing is, Reclast hangs around in our bodies for a long time, so if there are side effects, you have them for awhile.

I tried Forteo and could not tolerate it. I saw an immunologist to try to get on it, years ago, before Tymlos was available.

I don't know why your doc suggested Forteo instead of Tymlos. They work in a similar, if slightly different, fashion through the parathyroid. Both build bone, and quality bone, because they don't affect resorption the way Reclast and Prolia do.

Tymlos comes in a pen with 8 clicks. As I have written before, I reacted to the full dose, regrouped, and started with only two clicks, then moved up to 7 for the past year. I feel a lot stronger.

Tymlos gives a strong foundation of quality bone, I have been told, before maintaining with Reclast, which stops resorption but does not have the same active bone-building ability.

I know it feels overwhelming. Maybe you could see a second doctor. To simplify, there are anti-resorptives (Reclast and other bisphosphonates, and Prolia), bone- builders (Tymlos and Forteo), and Evenity, which is both. I am saving Evenity for the future.

Thank you so much. I wish all doctors were on the same page. I think I'll talk to my primary about this and maybe see an endocrinologist. You are so helpful. Thanks for your insights.

I was on Tymlos for 2 years, did really well with it. When my endo told me I had to do the self injections, I said No Way. She assured me it was simple and it is. I HATE needles, but this I could do. Gained bone density, just got a little dizzy, so switched time of day. Went on prolia for a year, did not help. Then went on evenity. No side effects except for a very sore arm from the monthly shot.
I am going back to Tymlos soon. This has been the easiest and best treatment for me. We are all different and have to do what’s best for each one of us.
Good Luck

Good evening @ssapp1, Thanks for explaining how you handled the needles. I also found it easy, breezy. I am glad your bone density improved. And now I have a question. If I understood your post correctly, you have done the following.
Tymlos 2yrs building bone
Prolia 1 yr protecting bone
Evenity 1 yr building and protecting bone
And now you plan to go back to Tymlos. Will that be for another two years? How do you plan to protect the bone you have created as Tymlos does not present that element? Has something been added to one of these medications?

Thanks for participating in the Osteoporosis group. It is very important to understand what members have chosen and what they have encountered.

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

I didn't know Tymlos had been approved for a second two years.

Patient assistance is only for 18 months, for the first round. I hope that changes!

@artscaping - huh, we’ll I don’t know. I’ll have to bring it up with my endocrinologist. She said I could be on Tymlos for 2 years, then be off of it for 2 years, then go back on it for 2 years, then go off again , etc.

Thanks for mentioning it.!