My Experience on Evenity for Treating Osteoporosis

Yep, I fractured my left hip 4 months ago. I already had the dexa scheduled so doctor said to do it since it took so long to even get an appointment.

Did you get PTH and CTX before starting Tymlos?

If PTH is high would that exclude me from taking Tymlos?

Thank you, everyone, for your contributions to this topic. I am on my third or fourth dose of Evenity. Experiencing depression and fatigue. It really affects my quality of life especially since my job is quite demanding. Any input appreciated, thank you!

PTH, P1NP, CTX, alkaline phosphatase, Vitamin D level, calcium level, maybe others- your doctor should know what to order.

Do you have reason to believe your PTH is high? Is your calcium level high? Tymlos and Forteo will raise calcium for a few hours, I was told. I don't know what level would mean you couldn't do Tymlos but your doctor should know. Maybe someone else can chime in with experience on this.

Just a FYI I have OP because I had celiac and didn't know it. I'm what's called silent I have no symptoms except for the OP. There is a correlation between Celiac and OP since Celiac is a malabsorption disease.
In my own opinion I like your thinking of doing Tymlos then switching to Evenity if necessary. Wish I had thought of that.
Just so you know I did Evenity for 9 months and stopped due to increasing joint pain in my hands and wrist. The greatest gains with Evenity are in the first 6 months. My spine dexa went from -3.6 to 3. No effect on my total hips which are -1.4, osteopenia. The best is my trabecular bone score went from around 1 to 1.355 which is normal. So the insides of my bones are in great shape.

Thanks for the lab info! I don’t know a lot about PTH but was reading Great Bones book and saw it mentioned. My doctor is very nice but he did not mention anything about testing prior to using any of the meds. Maybe he was going to mention it on next appointment.

He did review my labs from beginning of March but I had not tested for PTH, P1NP, CTX. Calcium is 9.4 so I think good. He told me I could choose which med to use and for me to call insurance to see if they cover it. I guess I just want to be prepared and informed in case he doesn’t order any of the test. I have another doc that would probably order for me.
As nice as he is, just not sure how much confidence I have in him yet. I’ll call his office to ask about testing.

Thanks for the info @ann707. I’ve had celiac for a long time and am super strict but can still have issues if accidentally ingest gluten. I think besides the celiac, I am hypothyroid and have been taking Armour thyroid for a long time which suppresses TSH. In order to my free t3 and free t4 in a good place my tsh was very suppressed for a long time. I’ve read this can also attribute to OP.

We can thank @windyshores for mentioning Tymlos first and then Evenity.

I’m glad the Evenity worked for you where you had the worst bone density and that your bones are in good shape! I hope your joint pain goes away soon. What are you following up your Evenity with to lock in all that gain?

Can I ask how you found out you had " Silent Celiac"?
Lisa

I was diagnosed with OP when I was 54yo and there wasn't any good explanation. The reason my primary doc would give is I was Northern European descent; yeah lame. Anyway, after a lot of moaning and groaning to various docs one sent me to a rheumy who ran a bunch of tests. When I saw him he asked if I had ever had any stomach problems. I have a cast iron stomach I could eat anything. So he said I have Celiac and the only symptom is OP. I knew one person whose only symptom was anemia. Celiac has a very wide variety of symptoms; aren't we lucky!
I follow the GF diet 100% and really don't have any problems with that. It's just a life style you adjust.

Did he diagnose you with celiac via blood tests or biopsy?
Many of us develop osteoporosis just after menopause due to estrogen loss. My kid has celiac and we have both been GF free for 20 years. I developed osteoporosis in my early 50's. Bone loss was abrupt at menopause and then eased up until I went on cancer meds.

I followed up Evenity with Reclast which I had taken before. Unfortunately, the pain in my right hand increased and within 6 weeks or so it had spread to my left. That was a year ago. My hands/wrists are better not 100% but better. I switched to actonel once a week about a month ago. It is shorter acting and if there was a problem I could discontinue it and try something else. Not sure what but so far so good but gastro problems are somewhat common.
Just a FYI I did the DEXA a year after stopping Evenity and adding Reclast