I am afraid of trying Tymlos and other drugs due to side effects

@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.

@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😉

I am so grateful that you took the time to respond with such a thorough explanation. Was it difficult self administering the shots? I am so sorry that you had to deal with a compression fracture after the Fosomax improvement.
Forteo (teriparatide) requires a follow-up drug because it primarily stimulates bone formation, meaning when you stop taking it, there's a risk of bone mineral density loss, so a different medication, usually a bisphosphonate or denosumab, is needed to maintain the bone gains achieved during Forteo treatment and prevent bone loss after stopping the drug; this is due to the mechanism of action of Forteo, which primarily focuses on building new bone rather than inhibiting bone breakdown.
Key points about Forteo and follow-up medication:
Bone building effect:
Forteo works by stimulating osteoblasts, the cells responsible for building new bone, leading to a rapid increase in bone density during treatment.
Limited treatment duration:
Due to potential side effects, Forteo is typically only prescribed for a maximum of 2 years.
Rebound effect:
When stopping Forteo abruptly, the bone turnover rate can shift back towards bone resorption, potentially leading to bone loss if not managed with another medication. Common follow-up drugs:
"After completing Forteo, doctors often prescribe bisphosphonates like alendronate or risedronate, or denosumab, which primarily work by inhibiting bone resorption.

@lhankins so sorry! Remind me: how long have you been on Tymlos?

Doctors often seem to feel obliged to follow the studies on meds which are usually for certain doses. My endocrinologist is chair of endo at a major urban teaching hospital and was delighted that I got on Tymlos at all. He is now using the titration method for other patients (or maybe had had already, before I did!). He said 60mcg is therapeutic but of course encouraged higher. I actually told him after the fact. I believe that since we have a right to decline meds, we have a right to reduce the dose, especially when our intention is to take as much as we can tolerate. So I reduced dose, got on Tymlos that way, and told my doctor that the method worked to get me onto an acceptable dose.

I wish you knew if the calcium was high on 60mcg. Do you take calcium supplements? Did you stop for a period of time and was the testing done without any Tymlos shots? Calcium metabolism is complicated and there is a lot that is hard to understand.

I found out recently that we can have DEXA's more often if we are being treated. Can you see where you are at now? I did Evenity followed by Reclast after Tymlos. It is not well-studied but my doctor relented and many on here are doing that. Then again, if your bones are okay, you could do Reclast.

As I have written, my doctors don't use Prolia due to rebound. Some on here are doing 1-3 shots as suggested by McCormick, apparently, then Reclast or Fosamax.

If you have a reaction or problem with a med that most people don't have. I believe you deserve flexibility. And insurance should cover any option since you have "failed" Tymlos and Forteo causes the same issue. Let us know!