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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All the bone drugs fill up the holes but causes poor quality. Do research on this on your own and talk to your doctor. All drugs have side effects. Research risk/benefit factor.
WOW.....I totally get your concerns. Pros and cons to everything. We can't tell if our bones are healing without testing. Too bad it's not like a blister that you can watch heal. So everything needs a trip to the doctors office. And you have to take the meds for quite a while before you know if they are helping. It's a roll of the dice and trusting your doctor.
I started with Fosamax and within just a few weeks had indigestion 24/7. I went off of that and started Prolia. I took Prolia for two years with modest improvement. I had to stop Prolia to have dental work done. Then everything went downhill and downhill fast!! Six spine fractures in about eight weeks. Two surgeries. Then I went to an osteoporosis/bone specialist (I never knew there was such a thing) Fortunately, she knows a lot more than my OB-GYN did. The specialist recommended the two year treatment of Tymlos. I was hesitant but after lengthy consultations with her, my husband and I decided to go with it. First I had a DEXA SCAN so we had a base line. It was bad...at the one year mark, I had a second DEXA SCAN and my number were amazingly improved. I have six months left and am anxious to see the numbers at the two year mark. I too have the rapid heart beat after injections and the belly fat (which most comments say goes away after stopping Tymlos). I have also had high ALK phosphate numbers in my blood work. However, Tymlos can throw those numbers off. After adding magnesium to my daily meds, that number has very slightly improved. The doctor is confident it will go back into the normal range upon completion of the full treatment and I have no other symptoms to justify the high numbers.
So....bottom line for me, this has worked and I will finish the two years. After that, I think reclast but I am not sure. She may recommend something else. My back will never be the same and I don't think it will ever be pain free again but hopefully, no more breaks!!
Do your research, get a second or third opinion, ask a lot of questions and do what you feel is right for you. No one knows your body better than you (no matter what the doctor says).
Stay on this forum. You will get more information here than anywhere.
Take good care of yourself and keep us posted on how you are doing.
All the best to you.
I posted below and should have mentioned I too am 68 years old and started 18 months ago on Tymlos. At that time my DEXA SCAN numbers for my spine were -3.1. After 12 months on Tymlos, I repeated my DEXA SCAN and the numbers for my spine were -1.8. Dramatic improvement.
Sorry....I should have added that to my post.
Many people take Pepcid, Zyrtec, Benadryl, Allegra, Cromolyn, etc. These are all drugs that try to lower histamines in your system.
I am concerned about taking any osteoporosis drugs because I have already gone twice into anaphylaxis with other medication.
That isn't quite true. Anabolics (Tymlos, Forteo) build quality bone.
Melioguide.com
She has a new video describing how bone is made.
Thanks for such a thoughtful post. I’m at the which drug ?stage. Would you share did you do a plasty surgery of some kind? Compression fractures for me recently and had not been on any drugs yet. 77 years.
This is what an orthopedic surgeon told me.
How soon after one dose of Reclast can a DEXA be done?
The best modalities to improve spine density to allow spinal surgery, fusion or disc replacement?
It depends on what drug he was talking about. It is absolutely untrue for anabolics. Maybe he is referring to the older biphosphonate drugs like Fosamax.