Struggling with Tymlos medicine

@njx58
Thanks for the replies - I understand what you are saying, it's just that the provider never told me about it, even after I had finished the Tymlos. I was never told that I would need to take another drug to keep the gains. The clinic just sent me on my way. My husband was on Forteo, and he was told he would need 4 Prolia doses when he completed the Forteo. He had one, then was told he wouldn't need anymore. Would this be correct, or should he have stayed on Prolia from that point forward? Anyway, my Tymlos treatment ended in 2022. I had a DEXA in 2024 - it put me in the osteopenia range (I don't know the exact numbers) so it must have improved some. I just had another scan a month or so ago, and it was stable from the last one (osteopenia). I'm fortunate that I haven't lost more bone.

@gently I have indeed wondered about what you said about the causes being resolved. In my case, I was never given a cause, so I really have no idea if three years of nutrition and exercise have "fixed" something in addition to Tymlos.

This will come into play when I see the endo in January for my DEXA and one-year post-Tymlos follow-up. Is one year of Fosamax enough? Usually it isn't, but maybe? I'm going to be very interested to see what the DEXA says.

It is certainly frustrating flying blind, but we all know OP is an especially frustrating condition.

@lisaberkowitz
Sadly, windyshores has retired, but has left us with the wealth of her experience.
Start as low as you want 1 or 2 clicks and wait a day or so to see if there is negative effect, then move up a click or two and wait again. This gives your body a chance to adjust.
Some are dizzy after the injection as calcium is released into the bloodstream. It expands the blood vessels making your heart beat faster.
You can mitigate the effect by starting out hydrated, giving more volume to the blood to help fill the dilated vessels. Caffeine and salt constrict the blood vessels. Tea and an olive maybe.
As the vessels expand your blood pressure will drop, which you may not notice.
Some take the full 8mcgs and never notice anything. Some few are allergic to phenol the preservative in Tymlos.
The needle is so, so tiny. You can't injure yourself with it and you might not even feel it.
Some people pinch their skin first. If you pinch and let go before injection you are less likely to have a tiny bruise. You can inject in your stomach or your thigh with the same absorption rate. I like the thigh though I'm on the other pth drug, Forteo.
Nice sequence Evenity to Tymlos.

@lylii
I find it exciting that two years after stopping Tymlos, you are osteopenic and haven't lost everything gained. What if you could take Tymlos for two years, not take anything for two, and then return to two years of Tymlos. I could really like that sequence.
Funny about your husband's treatment. I'm glad he only had one Prolia injection. It can get dangerous quitting after two. Is your husband getting dexas.
I think you lose Forteo bone a little faster than Tymlos bone.

@njx58, I have been curious about what caused your osteoporosis. You mentioned your testosterone being normal. It was great that you knew the ropes and had proceeded in the right direction so you could guide your wife.
We were lucky, you know, to start with medications that didn't cause us any problems, to start with the best drugs available.
I'll be interested January dexa to see if you've lost maintained, or gained density.
Would you take another 2 years of Tymlos, or switch to Forteo for two.
Oh, and I'm glad you are lingering here on connect with good advice.

@gently We have communicated before about Tymlos. I just wanted to add that my Endo at first wasn’t aware of the titration but she is now. In fact, she said to me, Tymlos trials were only done with 8 clicks so that’s why they are forced to say that. But she says, that doesn’t mean lower clicks aren’t helping. She said start with two and work up slowly as your body adjusts. Not to stress trying to get to 8. I believe I have read on here that four is therapeutic from Windy Shores who helped us so much with her story.

@gently I am certain my insurance will not cover more than two years on any anabolic. I've seen the authorization form questions.

Also, it won't help. My gains were only 3% in the second year. Tymlos can be much less effective in the second year, even beyond 18 months.

If my T-score is -1.7 or whatever, I can live with that because I feel strong with the gym and with all the running.

@stress101 hey, friend. I'm so glad to hear from you.
I'm delighted that your endocrinologist is learning from you.
Windyshores enabled her physicians to help her other patients with her method. Although, she confessed, she tried titration before telling them about it.
Radius Health did have an early trial of 20, 40 and 80 mcg to determine which level resulted in the most bone. 40mcg was successful, but 80mcg added more bone.
Just pay attention to how you feel. With the kidney stone, I'm suspecting hypercalcemia. Are you still on 1200 (supplemental?) calcium) You might consider lowering your calcium and/or the D3. You might add magnesium citrate; both magnesium and citrate reduce the incidence of stone. Magnesium binds with calcium in the bladder and prevents the calcium from crystalizing. I'm sure you already know that you have to take them two hours apart.
I keep reading that we are all a little low on magnesium, but there isn't a good way to measure it. I've added magnesium orotate which doesn't affect digestion, but does help keep calcium out of the vascular system.
Did you celebrate your 83rd?

@njx58,
and no sense in taking medication that you don't need.
Will you track with bone markers. -1.7 would be so fine. Don't forget, though, how silent osteoporosis is until bones fracture.