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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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I am hoping to read her notes so I can verify what I thought she said. Notes are up but they are blank. I have cll, chronic lymphocytic leukemia, a blood cancer (grade 0).
Maybe the possibity of getting a bone cancer from Forteo is the problem.
This is the second place that seemed to minimize the seriousness of other possible adverse reactions. We are more than just bones
I am on full Tymlos dose for 6+ months with no side effect (rapid heart rate) except a week or so initially.
The experience of many on this Mayo site need to be shared with Radius, manufacturer of Tymlos. In turn they should study this further with their R&D and medical team, and consulting physicians and share the information with practicing endocrinologists.
Maybe this website's Osteoporosis and Bone Health coordinator could initiate this effort. Thanks
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1 ReactionI have talked with the company several times! I reported side effects from my initial experience, and also reported my partial dose ramp up and results 🙂
Tymlos and Forteo have not caused any bone cancers and the black box has been removed. I had breast cancer so I was concerned that a metastasis could grow. With your leukemia, I wonder if it is a risk. It is hard having two concerns and specialists focus on their area but this seems like a serious thing for docs to investigate!
Every person's bone density and bone quality are different so that's great you are asking questions and committed to get information from several reputable sources to make an informed decision about osteoporosis medications. After doing a lot of research, reading, and conferring with my endocrinologist, I decided to take an anabolic medication (Forteo) and will follow it up in 2 years with an antiresorptive like Reclast. This sequencing will require 3-4 years. Also, re: your statins remark: I was unable to lower my high cholesterol levels through diet and exercise. I felt the benefits of statins (mainly lowering my cholesterol levels and the risk of heart attack and stroke) outweighed the risks. To my knowledge, I have had no side effects.
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2 ReactionsI have just completed one month on Tymlos. I have managed to ramp up to a "3" in that time. I have also threatened to give it up twice in that time.... I powered through it with the support of the Tymlos nurse and the comments of women on this site. Thanks to all of you. My side effects are rapid heartbeat-- which is distressing, scary, uncomfortable, but apparently not dangerous despite how it feels. The Tymlos nurse recommended I lie down and elevate my legs after the shot. That definitely helped. At a "3" I got a splitting headache that lasted for hours. But a few days in, that has lessened. Sometimes I will go back to a "2" just to give myself a rest. I have also figured out the injections, which hurt when I first started. I had read that "you don't feel it"-- but that wasn't the case for me. I think I was going too slowly. My rec: don't jam in in, but go with confidence and conviction. I can sometimes make it not hurt. There is always a red mark afterwards. My thought at the end of one month? Only 17 more months to go...
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2 Reactions@lnl my heart got better when I switched to morning. I am careful not to eat too much beforehand but a few crackers helps. I forget if you switched away from morning! (Also did the nurse show you how to pinch up and then let go?)
I switched from the morning....
Re: the pinching-- the Tymlos nurse said NOT to do that! I forget the reason, but she said that's absolutely the wrong way to proceed. Go figure.
I'm starting month two and have all the protocols in place and still no side effects. Knowing I do say that fully aware that I could be jinxing myself. Tymlos is not getting in the path of my food intake:)
@lnl I am used to injections because my kid has type 1 diabetes. The nurse said not to pinch because you can squeeze the medicine out. But if you don't pinch, it hurts more. And we are injecting into fat.
So try pinching up- gently, it doesn't take much- just enough so you are injecting into fat. Then let go at the moment you inject. That way it doesn't hurt when you put the needle in but you also don't squeeze the medicine out.
A nurse can show you but you can probably figure it out. I cannot imagine not pinching!