I am afraid of trying Tymlos and other drugs due to side effects
How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?
I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.
My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.
Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!
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My insurance approved it because of my T-scores and because I have an esophageal disorder that prevents me from taking any oral bisphosphinates.
This is a long road for us ; may we embrace the challenge and manage the fear as we share educate and get the best medical advice as we aim for the best possible outcome. First off, on tymlos, start with a small dose - as advised by so many on this platform. I had severe palpaitations and weakness at 1/2 dose tymlos -- so restarted at 2 clicks and went up gradually ( 1 1/2 weeks at each setting) until I reached full dose. Meanwhile for heart palpitations take cococut water. Drink it troughout the day 3 -4 cups. This will soften and help the heart reaction. I stayed with nightime admisnstration because tymlos caused weakness for me and at night I rested.
My best to you on your journey.....
Hi I don’t know if this is where I type my concerns about Reclast, but I had a Reclast infusion 2 weeks ago and am still dealing with side effects. When one stops, another starts. I’m so fearful of repeating Reclast in a year. I’ve had bone pain, headaches, chills, aches, swelling in arm and hand which went away and am now dealing with eye aching and headaches again. My energy level was horrible for 2 weeks, but it is improving a little. I don’t think I’ve ever felt this sick before. Prolia didn’t help me so my Dr recommended Reclast. I am so afraid of aging and breaking bones easily with my osteoporosis, but I feel like Reclast is like a poison at this point. Can anyone offer advice or experiences with Reclast? I was told the side effects would last for 3-5 days. This has not been my experience. Thank you.
honestly - give it some time. It sounds like its working for you! There are tests to ask your doctor about P1NP, CTX, bone imaging and DEXA scans. If you see the numbers going in your favor you might feel better about ingesting the "poison." (it does feel that way, right?!) I have been on other really HORRID medications but my first Reclast was unbelievably bad. you are having bone aches because the medicine IS stimulating your system to do what the medicine is for. Don't give up. I was promised it wouldn't be bad when I go next time. The research does substantiate that! (I read it) but they put me on the Tymlos so I get a break for 3 years before I get another Reclast. Its the Cadillac of the bone meds so get the support you need to stay the distance! Talk with your doctor's endocrinology team if they have one. Call the pharmaceutical company too. Six months after I did the reclast I had an xray of my spine. Six months after that I had another xray. My surgeon could SEE my bones were denser!!! Hopeful, for sure! Good luck.
Thank you so much for your reply and your advice. It’s so reassuring to hear from someone who has some of the same experiences with Reclast. My Dr didn’t seem worried about the side effects that I described, so maybe they are a result of the med working as you say. I will ask about some drug info and endocrinology assistance. That’s good advice as I am still fatigued at times during the day. Also, I will ask about the tests you mentioned as maybe they will provide positive feedback.
I was teary-eyed when I read your words. It helps to know that I’m not alone. Thank you again very very much!!
I’m on for a week now and moved to half dose since my nausea and headache is so bad. Should I stick it out?
@laurieruns26 yes! I actually went down to 1/4 dose (2 clicks, 20mcg). I could not at first tolerate 1/2 dose. I eventually got up to 7/8 dose and had a 20% gain in spine.
Windyshores gave me same advice for which I am very greatful.
My experience was my pounding heart that was awful. I started all over at 2 clicks(2o mcg) and after a week was able to move to 30 mcg... gradually I moved up to 80 but it took over 2 months.
This sounds very difficult and discouraging for you. It is somewhat reassuring to read loriesco's reply and I hope these awful side effects diminish soon.
I am scheduled to have my first Reclast infusion this month and I am really hesitant and anxious. I've tried for many years to avoid this but my most recent scan scores clearly show that I need an intervention. Due to a blood protein issue, I can't use the anabolics, which I was hoping for as many of the comments reflect the benefits of managing the dose, unlike the Reclast infusions.
I hope to hear that you feel better soon.
Please keep us posted on your experience once you have the Reclast infusion. Thanks.