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I am afraid of trying Tymlos and other drugs due to side effects
Osteoporosis & Bone Health | Last Active: Sep 27 2:28pm | Replies (151)Comment receiving replies
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.
Replies to "I was afraid too. I had osteoporosis for many years, was on a cancer med that..."
My endocrinologists, the first one who retired after I had been going to him for a couple of years, and the second one who took over my care, ended up keeping me on Forteo for nearly 4 years. I never noticed any side effects, but my bone density as measured by DEXA scans, never improved as much as we hoped it would. Never went out of the osteoporosis range. When my insurance refused to cover the drug anymore a few months ago, my endocrinologist prescribed an IV infusion of Reclast. I hadn’t researched it much, and I didn’t like the idea of taking a drug that would stay in my bones for a year, hopefully improving my bone density, or at least stabilize it. It concerned me that you couldn’t stop the treatment if you experienced side effects. I am very grateful that I haven’t noticed any side effects, and we’ll see what my bone density is like in February. ***Note: I’m about to turn 66. I was diagnosed with osteopenia in my 40’s. I took calcium and vitamin D for years, (still do) & walked a lot for weight bearing exercise. When I was 54 I started taking bio identical estradiol (transdermal) & micronized progesterone (orally), hoping it would help prevent more bone loss. I took them for about 7 years. I think I was first diagnosed with osteoporosis in 2018. The worst my bone density has ever been is -2.8.*** I started taking Forteo in 2020, a few months before I was going to be having spinal fusion surgery because of a collapsed disk. My orthopedic spine surgeon told me after my surgery that he was surprised & pleased by my bone quality in my spine, better than he expected based on my osteoporosis diagnosis. There were no complications or problems during or after my surgery, which was great news. I am sharing this because it seems to show that bone density measurements don’t always show the true quality of our bones. Reassuring to me.
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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!