Completed Tymlos, considering refusing Prolia

@vansks Wow, you did great! Congratulations! Did you tolerate the Tymlos well? My doctor wants me to take it; I’m having a cardiologist do a thorough examination of my heart prior to starting because of the palpitation side effect. But good for you, that is great news!

I, too, was reticent about starting Prolia. I only had one injection, but I tolerated it very well. The only thing I had was this weird, wonky feeling in my right elbow. It felt “loose,” so I just took it easy, and it went away in one day. I’d like to back on it instead of the Tymlos and build my bone naturally, to be honest, but my doctor is not cooperating me on that, which is troublesome.

@beachesanddreams

I am curious when you say build bone naturally. Has it been determined if your bone loss started in menopause as most womens does or was there another underlying cause?,

Hi @gravity3. I had breast cancer 22 years ago, and went into early menopause at age 38.

When my rheumatologist wanted me to take both a biologic (for psoriatic arthritis) and Tymlos, I made an appointment with my oncologist, because I recalled she once told me I wouldn’t be eligible for a biologic drug. I also trust her implicitly when it comes to bone health, and she agreed to review my case, as it helps her current patients.

She is the one who suggested with my DEXA scores to continue with Prolia and build bone naturally, with calcium supplements, vitamin D + K, diet, etc. She said she’d defer to my rheumatologist, but that if she were treating me, that’s what she would do.

I’ve since gotten a second opinion from another rheumatologist in the same hospital system as my oncologist, and she agreed.

I hope that answered your query. If not, feel free to ask away!

@beachesanddreams I had a problem with headaches when I first started Tymlos. Every day I'd wake up with a bad one that got better as the day went along. I stayed on full dose shots, the headaches gradually improved, took weeks. I have problems with muscle aches and stiffness and nighttime leg cramps. I can't say Tymlos is causing that, I'll have to be off it for awhile and see if I improve. I never had palpitations.
I'm leery of Prolia because of the possible side effects and the risks in stopping it. I'd like to see if I can maintain my present scores without any more injections of any kind.
I'm surprised your Dr started you on Prolia without bone building drugs first. I hope you have a good and safe outcome in the treatment you decide on!

Happy to hear about your positive results. I am on Tymlos for over a year and a half. I too have had positive results. I am terrified of the next step medications especially the biophosphonates because of osteonecrosis of jaw possibility. I already have issues with gum, recession, and bone loss in my jaw. Doctor says it’s a very small percentage of people that have this side effect but if it happens, it would be horribly life-changing. Honestly, I don’t know what to do next. I’d appreciate anyone’s suggestions or experience taking any follow up medications. Thanks 🙏🏻

@kaa1

Can you stay on tymlos?

@gravity3 Good morning! I had treatment for breast cancer in ‘03 and went into early menopause. I visited my oncologist earlier this year to discuss osteoporosis treatments with her, as I trust her implicitly. She was the one who, while deferring to my rheumatologist, recommended I stay on Prolia and build bone “naturally” with proper exercise, supplements, and diet.

Honestly, because I tolerated Prolia very well (I’ve only had one injection), I’d rather take this route, but my rheumatologist is digging his heels in.

He really wants me on Tymlos. I’m in osteopenia everywhere except lumbar at -3.1.

@vansks I tried to reply last night, but I think there’s a daily limit. My reply wouldn’t post. This is my second day here on Mayo Connect, so I’m learning. 🙃

My gynecologist was actually the one who started me on Prolia. I only had one injection and did very well on it. I was scared of the side effects, but I only had a wonky sensation in my elbow that lasted one day. That was it.

The reason I started seeing a rheumatologist was because my gyno SWORE Prolia was the only drug I could take for osteoporosis, and deep down I knew that wasn’t true. I didn’t care at all for how her nurse spoke to me about my treatment. I felt very unsettled.

Now here I am, reconsidering Prolia over Tymlos once more. We gotta ask the questions though, right?

I think my gyno - and my oncologist agrees - that because the osteoporosis is only in my lumbar spine (osteopenia everywhere else), that Prolia could help build bone alongside proper supplementation, exercise, and diet. Apparently, Prolia can help build new bone in some people.

I could try Tymlos at a low dose to start and titrate up, see how I do. I’m getting an opinion by a cardiologist as well, to cover all bases.

I did very well with Alendronate too. That also helps you maintain bone. I had no side effects at all. No fatigue, no headache, nothing. Has your doc talked about Alendronate/fosamax? You take it once a week, so if you experience side effects, you can stop taking it. Of course, I don’t know if that’s the right drug to help you keep all that fabulous new bone you’ve built for yourself, and you want to hang on to that for sure!

@kaa1

Just an FYI, in addition to supplements (including K2) and fosamax, my wife just started vibration plate therapy coupled with biodensity machine. Both modalities have been shown to increase bone density.

@csrb7007 That’s great information to have, thank you.

Is this therapy done at home or in a doctor’s office/facility? Is your wife on a bone building drug and/or supplementation?

Might you be able to share a link to this combined therapy? I will look myself, of course, I just thought a link here would be helpful to many.

Thanks again. Hope you’re having a great day!