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

OK, Thanks for the advice. Can you tell me what side effects you experienced as you ramped up to 6 and what now happens when you do 7 clicks?

Forteo causes so much joint and bone pain I can barely walk, terrible nausea, flu symptoms, headache and on some occasions total exhaustion that makes me feel like I am being held down by lead weights. It is awful. I tried to go back on it on Saturday night and got sick again so stopped it. Now today is the first day I have felt reasonably well. How long did the Tymlos side effects last at first? Sorry to ask so many questions but you have been of so much help. Thank you. Pat J in San Jose

I think it’s all about the money. They only want to offer a one dose pen because it’s cheaper. My feeling is that the docs just go by what the studies show. They don’t share their experiences of what they have seen with their own patients. I consulted with a doc who shares his years of experience with what works. He agreed with starting low and increasing my dose as my body adjusts. It’s like my experience with gabapentin. I took what is considered a holistic dose of 100 mg. Most take 2 thousand or more mg. Well I was so groggy and tired the next day that I had to start with 25 mg and slowly work up to the 100. My doc thinks I metabolize drugs very slowly so it takes a long time to get through my system.

I am in keeping with you on all of this. Funny, I too had issues with gabapentin and can't tolerate it. I tried emptying out the capsules and taking only a little but that was not practical so I only tried that once and then gave up. It took 4 days to get rid of the side effects, and miraculously after 3 days I suddenly had no pain for one day. Who knows what the correct dose should be. Very frustrating and I wish I had doctors who were experts in dosage. But as you say, the Pharma companies probably keep costs down by doing one dose options. There is going to be a generic Forteo in future with a different dosage pen which I am in line to test. I wonder if it steps dosage too?? I'll respond to connect when I find out.
PJ

I saw an endocrinologist this morning snd left frustrated. She wants me to go straight to Reclast and did not mention a partial dose to begin even though I mentioned my fear of reactions snd my unusual reaction to medications. She does not do Evenity as it is too new to have expetience with. She ruled out Forteo as it may be counter indicated by my cll.

And she kept making a point of how petite I am. I gather that increases my risk factor.

My doc wants to do 1mg Reclast while full dose is 5mg. He told me to drink a lot beforehand, too. After three months I am then supposed to tell him what dose I want- 2, 3, 4 mg?

@mspatart my side effects changed. At first I had headache, some dizziness, didn't feel well. A little heart palps, not bad. For the last 12 out of 18 months, no side effects from 6 clicks and fatigue with 7 clicks but I felt better if I got up and got out.

I remember you stating this so was surprised when that option was not proposed. The Reclast would not be following Evenity, Tymlos. or Forteo. Maybe if Forteo might be counter indicated, that could mean Tymlos would also be. I tried reading her notes but they are blank. The practice is slowly transistioning from FollowMyHeatth to myChart which complicates matters

Thank you again. Those side effects are not too bad compared to what I am having with Forteo. I look forward to the possibility of managing on Tymlos a lot better but appreciate the insight re: your experience.
Pat J

@njhornung why is Forteo contraindicated?

Some of us can tolerate Tymlos but not Forteo. But if your doc (or insurance) won't approve either, you have to try a bisphosponate or Prolia first. If you cannot tolerate the bisphosphonate, then insurance will often cover Tymlos or Forteo.