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@windyshores

@laoaca70 and @susanjohnston I miss Tymlos! I have several spinal fractures and felt safe on it. Doing the shots every day really is no big deal. It just becomes routine. The needle is small.

One advantage to Tymlos is that the dosing is adjustable with clicks on the pen. Full dose is 8 clicks. I had trouble with even a half dose so went down to 1/4 dose and moved up slowly. I landed at 7/8 dose long term and by 18 months had a 19+% gain in spine, 9% gain in hip, going from severe osteoporosis in spine to borderline.

I switched to morning and that eliminated headaches. I also found that moving around rather than resting seemed to help. I have low blood pressure so perhaps movement raised it. At first I had a blood pressure cuff and if my bp was lowish before the shot I hydrated and ate something salty. After while I found that was not necessary.

I have occasional atrial fibrillation and was afriad the rise in heart rate might be a trigger but I didn't have a single episode the entire two years I was on it.

I did 4 months of Evenity afterwards though noone else in my doctor's practice did Evenity after Tymlos. Now I am on Reclast. Hoping to do more of an anabolic. Forteo can now be taken more than two years for certain patients. I didn't do well with Forteo perhaps because it is not adjustable.

All of these meds have some side effects. But for me, fractures have been 1,000 times worse. With Tymlos I lived pretty normally and had a good quality of life. But yeah, some fatigue at times. No fractures since 2021.

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Replies to "@laoaca70 and @susanjohnston I miss Tymlos! I have several spinal fractures and felt safe on it...."

Did they ever remove the two-year limit? I know that when I had to get it approved recently after switching Part D plans, one of the criteria was that I could not have been on it for two years. Although, that may just be an insurance rule that hasn't kept up with the latest medical rules.

@windyshores
My last labs (last week) came back with such high calcium my rheumatologist told me to stop Tymlos immediately and contact my primary care physician. Since he is the prescribing physician and calcium levels have been normal up until taking Tymlos, I feel like he is seriously dropping the ball. Seems like periodic labs should be routine when starting a new med, but I had to ask for it when I started having some symptoms of hypercalcemia. I was taking the full 0.8 and wish I had stayed with the 0.6. Now his office has called me back and he wants to see me in person next month. His philosophy appears to be full dose or no dose. I believe many of these physicians are prescribing while knowing just the basics about the medications; nothing nuanced. I think he’s going to want to do Prolia and I will be declining. Now I’m afraid to lose any gains I may have made with Tymlos. I have an appointment with an Endocrinologist, but not until Jan 2026. I don’t have a primary care doctor, I have a PA and this is way beyond her skill set. Sounds like you have good doctors who work collaboratively with you. Thank you for all of your advice and knowledge on this topic. Looks like I’m starting at square one! Wish me luck😉

This is so helpful and is my plan with starting Tymlos: starting with 1/4 dose. I would like to know more about the rate of increasing the dose. Will you please tell us how many days till you upped the dose? And did you up it by one click at a time?

This is so helpful. Thank you!