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

I understand and feel the hesitation you have. At 67 years, osteoporosis has taken me to a new level of understanding that as we age, we don't have a way to predict which is a better path to take - which drug, if any, and the potential side effects of a chosen drug? And that path can change abruptly too!

Back in Sept 2022 I went into surgery for what was supposed to be a routine hip replacement but what happened was not routine. My femur head fractured as the doctor was replacing the joint. He had to place a permanent cable tie in the joint area, and the bone needed 8 weeks to heal. But how fortunate to learn that I have very brittle bones on an operating table, right?

I was able to get in to see an endocrinologist finally in January 2023, and learned to no surprise that the femur head fracture was typical of the type of fracture associated with years of taking bisphosphonates going back to my mid-40's with osteopenia. I don't regret that choice one bit, though because who knows what shape I would have been in without the help of the meds? Science has opened new possibilities for us over time that were not available back then.

I appreciate the candor of my endocrinologist because she was truthful about my future without taking anything. I don't want to experience a more debilitating break, so I am on Tymlos now. What will the next 'adventure' be in a max of 2 years when I have to stop taking Tymlos? My endocrinologist says she will have to wait and decide as the time nears. But if I get side effects earlier than that, requiring me to get off of it quicker, our decision will be based on what is happening at that time.

Wishing you the best, and so glad to have this support group! It's easier on my loved ones to talk with those with similar needs!

I, too, am cautious about taking any osteoporosis medications. I feel like I was getting regurgitated Amgen sales spiel at the osteoporosis clinic so will be seeing an endocrinologist on Wednesday. I want to fully understand my options; the good, the bad, and the ugly. I do not exist to be a lifetime income source for pharmaceutical companies so prefer taking the minimum needed. I have successfully declined statins that they want everyone taking. There must be a major benefit to offset the cost (risks).

I can only share my recent experience. Unfortunately, (praying this is a lesson to all!) I was not given a bone test prior to a rather complicated back surgery. I never healed and only got worse afterwards. The test should clearly have been done based on my risk factors. The end result was so bad that I now have "cages" that have migrated enough to make contact with arotic artery as well as another major vein. No new surgeon wants to risk a revision surgery, demanding that I take Forteo to build up bone enough to even think of a revsion . Feels like being held hostage. So I am now at week six with daily injections. I was so cocky and happy the first two weeka! No side effects. So happy because having vertebrae bone on bone and permanant nerve damage is enough pain! THEN week 3 comes! Every joint is now hurting and I am extremely unstable. Ankles and knees go out without notice and I have had several bad falls. There has been no change to meds except for Forteo. In addition, ALL of my lipid (Cholesterol etc) tests have completely turned upside down! In a matter of those three weeks! The pain keeps me up all night. Pain in places I have never had it, even with severe back issues. How the heck can the top of the foot feel like I was stepped on by an elephant? Shin pain worse than shin splints.
I have had no support medically wise currently, as I have been waiting five months for an ecndocrinologist appointment and with the needed revision surgery on hold I had to simply take it on my own. (After a 4 month insurance approval process), That is a very long way of telling you that, if the life saving surgery I so desperately need was not behing held over my head, there is no way I would have started this Forteo! FYI T score -3.8 and 62 years old. Make sure you find an empathetic physician that can review these side effects honestly with you. I wish you the very best. Again, don't want to freak you out, every body is different, you may well be able to tolerate. I have not

I was afraid too. I had osteoporosis for many years, was on a cancer med that made bones even worse. My endo did not want to use Reclast or Prolia due to other health issues and I could not tolerate Forteo (I went to an immunologist to try to get on, years ago). I made the mistaken assumption, as did my doc, that Tymlos would be physically intolerable. Net result is several spinal fractures. I would endure any side effect to avoid spinal fractures. I am here to tell you: osteoporosis has no symptoms, but fractures sure do!

When I first went on Tymlos and took the full dose or even half dose, it was impossible. I ended up in the hospital (long story). I stopped, investigate Evenity which was the other option, and went back on Tymlos but this time I starte at 2 clicks out of 8 on the injection pen. When my body got used to that, I went up a click. I got up to 6 clicks and my doc was happy and for the last 9 months have done 7. My DEXA gains have been amazing.

Tymlos causes fatigue for me, and some dizziness. I used to stay in bed but have found getting up and out actually helps. It is worth it!

Afterwards we can do a Reclast infusion but that lasts a long time and we may be able to take a med break with monitoring.

Thank you all for your honest replies. No matter what happens, it is clear this group is a great support. I truly appreciate not being alone on this!

I already have a major balance issue and live in a 3 story townhouse. Needless to say, I can not afford to have anything further aggravating the problem as the fracture I might then have would be to my neck.

I have had all kinds of vertigo in the last 20 years. What I found out with osteoporosis is that a minor unwise movement can fracture three vertebrae in 10 seconds. Then a lifetime of pain and disability. I would go through a lot with medication to avoid any more.

I have been on Tymlos for just short of one month, so I'm hardly an expert but I hope my experiences will help you. I joined this community to hear from others who were further down the road than I was, so that's what I can offer you.
I was terrified to go on Tymlos for all of the reasons. I am 63, small, active, in otherwise great health, and feared ruining all that. My worst number was -3. I also think of myself as someone who gets every side effect there is for everything--which really isn't true-- but close.
I am ramping up the "clicks" very slowly-- heading into week 4, I just administered my first "3" dose. The side effect I get is the increased heart rate. It is scary and uncomfortable, but apparently not dangerous. The Tymlos nurse (and yes, if you start the drug, get assigned a Tymlos nurse-- mine is wonderful--and yes, I am aware of who she works for) recently suggested I lie down and elevate my legs to lessen the effect. It totally worked. This gets into the issue of morning or evening injections (you'll find a lot about that on this site). I started out with evening, but then I found myself dreading the night coming, so I switched to morning-- when I'd be more distracted. But now that I'm lying down after the shot, I'm going back to evenings. I have figured out how to do the injections, so I don't dread them and the evening so much. I could keep talking, but I'll stop for now.
I will be glad to answer any other questions that I can.
Good luck.

I switched to morning because my heart is calmer then. I found staying in bed meant worst symptoms: I felt better if I got up and went out.

Today is one of the rare days in the 18+ months I have been on Tymlos, that I tried a full dose. Oh boy! I also ramped up slowly from two out of the 8 clicks on the injection pen and do pretty well at 7 clicks, do fine at 6, so if I have something important to do in the morning I do 6, and if I can rest and walk I do 7. Eight clicks is still impossible for me. I feel awful right now.

Even with partial doses like this, my gains were amazing. It's worth it for me. I have fractures and they are horrendous experiences that have long lasting effects. Tymlos' effects will stop in a year and a half or two years. I am so much stronger.

I am on Tymlos now and have had no side effects. A couple of years ago, I was on Forteo with no side effects. In a few weeks, I will go on Evenity. I am nervous about it, but since I feel that I must try it, I am choosing to assume that it will be okay. Will report here my Evenity journey.