Looking ahead after Tymlos: Reclast, Evenity or HRT?

Hi @windyshores. I recently finished almost 17 months of Tymlos. Unfortunately, I just found out I have high urine calcium (365), so I have to stop. At the one year mark I had a 14.7% increase in my spine and I am very pleased with that result. I don’t know if my hips improved or not because my left has been replaced and my right has a pin in it. (Therefore they can’t do a DEXA on either one.) They did test my right forearm and sadly it didn’t improve at all. I’ve been told that our forearms are mostly cortical bone and Tymlos doesn’t do much for that. This is very upsetting to me because I am a fine art painter and I’d hate to break my right arm or hand. Right now my forearm has a T score of -3.6 (severe osteoporosis). For this reason I wanted to do a short course (similar to what you did) of Evenity. I was hoping the Evenity would improve the cortical bone in my wrist. However, my doctor said that would be a huge mistake because I would probably lose all my gains from Tymlos. Since I had four compression fractures prior to starting Tymlos going back to square 1 is a terrifying thought! My question for you is did you lose any of your Tymlos gains while you were on Evenity? I assume not or you would have said so, but I’m asking the question because I have to be sure. Also, do you know of anyone else that followed this sequence with success? And lastly could you share the name of your doctor with me? You may want to PM that last information to me if you don’t mind providing it. I thought I had 7 more months to figure this all out, but now I have to know as soon as possible. If I don’t do the Evenity I plan to go on Fosomax. I did not chose Reclast because I have TMJD which often causes dental problems. From what I’ve read, Fosomax is much less likely to cause ONJ than Reclast. I’d appreciate any information you can give me. Thank you, @8fish

Good luck @windysgores! Let us know your results.

@8fish I wish I had known I could have a DEXA before 2 years. Noone told me that and I just found out!

I attended a master class with Lani Simpson before going on Tymlos and a woman in the presentation had done Tymlos then Evenity with gains from each. Some posters here have done that. My doctor said there was "no data" on this and both my doctor and another endo told me that I was the only one in their practice doing Evenity after Tymlos and was my "own protocol." My doctor wrote "thank you for your persistence" which I thought was humorous.

At 18 months my bone markers showed that Tymlos probably wasn't doing anything. I spoke to my endo, another endo (mine was away) and McCormick and all said to finish the two years but all agreed it might not be doing much. So stopping at 17 months might be okay. Congrats on your gains! (Cortical is tough to address!)

I am concerned that your doctor said you could lose all your gains if you do Evenity. Argh! Hope that isn't true! Evenity is so new that there is no research finished as yet to support going either way.

I am having a DEXA tonight. I did two years Tymlos at 7/8 dose. 4 months Evenity, half the time with one shot not two, and two 1mg (low dose) Reclasts in June and September. My CTX is 145 though my doctor does not rely on bone markers.

I feel like I have been flying a plane in the dark with no instrument panel! I see my doctor in early March and hope to discuss doing anabolics again, but I am sure there is "no data" on that either. A big question for our doctors: what is the long term plan? All these meds have time limits (Prolia is up to 10 years now but my doc doesn't use it). So if we have 20 years left, what's the plan?

@windyshores
Good luck with the DEXA! Interested to know the outcome.

I just looked back at my spinal X-rays and DXA 's from 2021 and 2023. I have fractures in T12, L1 and L5 but one x-rays says L2 as well. My 2021 DEX did L1-L4 ( two months after fracturing) and my 2023 DXA did L2-L4.

So comparisons may not be valid. Also, I just read that L3 and L4 do not give reliable results.

Fractures, scoliosis and arthritis (and other degenerative changes) all affect DXA (raise the scores in the case of fractures an arthritis). So I have a kind of ballpark mentality here. Plus DXA's fluctuate in my experience for no reason at all! At least I will have the same machine.

I had a 19+ gain in spine and 9% gain in hip with less improvement in femur neck between 2021 and 2023 and regardless of distortions from fractures I feel confident that Tymlos helped me a lot.

During COVID I was off Tymlos for 3 weeks (heart was affected by COVID) and then I didn't do full dose Evenity two out of four times. My doctor allowed me to wait two months to start Reclast and it was low dose, cumulative dose 2mg, and lst one was September. So I am nervous.

Hope you find out that you’ve make great gains! Let us know how your DEXA turned out! @windyshores

@8fish radiologist had a family emergency and my appointment was cancelled. They are very sorry so maybe they will find me a cancellation!

@windyshores
So sorry for the delay. Waiting for these tests is a whole other source of anxiety!