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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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Your doc is not aware Tymlos has "clicks" so you can do one to eight clicks. I have only rarely done a full dose and still have had great results. I started at two clicks.
Tymlos comes in a pen that allows you to administer whatever dose you want. As far as I know, it does not come any other way. If you go to the Tymlos website you will see a picture of the pen-- you will see the window that shows you what level dose you are clicking up to. It goes from a 1 click up to an 8 click (which is the full dose).
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1 ReactionWhy not inject the Forteo every other day when you first start? That will help the body acclimate perhaps
For some of us, the reaction to one shot at full dose is just overwhelming. That would mean having that reaction every other day, rather than every day. For me, doing the Tymlos at low dose and ramping up avoided any such reaction at all 🙂 Hope the same is true for others.
I am about to start Tymlos as well and from what I hear the pen has several clicks to it when you inject it so you can control how many clicks you use. I hope this med works well for both of us.
Best wishes,
Candy
Oh thank you for responding. I hope you do well and I will be ditching Forteo for Tymlos myself as soon as possible. I appreciate the chance to share this situation with you and the other followers. I feel lucky to have so many sympathetic ears and should to whom I can reach out. Pat J
Thank you for responding. I am having no luck with every other day Forteo. It takes 2 days to have a reaction but when it hits I am totally unable to function so I am going to consult with my Dr. about Tymlos. I can never understand why pharmaceutical companies don't offer stepped doses of meds when so many people have bad reactions to full doses.
Wow, Thanks. I cannot figure out how my doctor could be so unaware of this option. But the medical profession is not trained in all the myriad medications they need to know about as they are in other aspects of their work so I guess it is not too surprising. I suspect I may never get beyond 2 clicks myself but it is great to know that even at 2 you are doing well. I am so grateful for this information. Pat J
I believe it is because they did studies with full doses so they are kind of locked in. In fact, the speciality pharmacy won't even provide different needles from the study. And studies were done with shots in the abdomen so they will say no to thighs with Tymlos (not Forteo). Etc.
Doctors are under the same restrictions- limited to data from studies- but my doc is flexible and I brought the partial dose suggestion to him. Given that that was my only shot after literally 14 years of trying to tolerate meds, he was delighted-but could not prescribe it himself!
@mspatart no no no I did not do well on 2 clicks- I did well on 6 and actually more often on 7 clicks. My doc was happy with 6 but I kept trying to go up and managed 7 on days when I don't have something important to do in the morning. I still cannot tolerate 8. I don't believe two clicks will help you. Start at two and move up every week or two, depending on how side effects are going. Your body may adjust to two so there are no side effects, then move up to 3, let your body adjust and so on. Try to get at least to 6 clicks for a therapeutic dose.