I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

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!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@sarahstuart

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:)

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Glad to hear that. If I've learned anything on this site (and I've learned a lot), it's that a protocol that will require a trip to the ER for one person will elicit a shrug from another.

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@windyshores

@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!

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I want to correct my previous post @lnl. I just did my injection! I pinch up, inject, and let go immediately after injecting. No leakage at all. I was trained by endocrinology how to do this for my daughter, so I was fortunate to know how to do my own injections years later!

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@windyshores

I want to correct my previous post @lnl. I just did my injection! I pinch up, inject, and let go immediately after injecting. No leakage at all. I was trained by endocrinology how to do this for my daughter, so I was fortunate to know how to do my own injections years later!

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Thanks. I'll contact the nurse to have her explain again why she advises against it-- I don't recall it being about leakage. The reason it came up in the first place is that I told her I had learned on this site to pinch-- and I was sort of proud that I had learned that without her. Extra: I know at the beginning I was horrified at the thought of injecting into my belly, so I tried my thigh. That was a disaster.

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@lnl

Thanks. I'll contact the nurse to have her explain again why she advises against it-- I don't recall it being about leakage. The reason it came up in the first place is that I told her I had learned on this site to pinch-- and I was sort of proud that I had learned that without her. Extra: I know at the beginning I was horrified at the thought of injecting into my belly, so I tried my thigh. That was a disaster.

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My only discussion was with the nurse and she simply said: Stomach, your thighs are too thin.

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I have never heard of just sticking a needle straight into the belly without pinching up. I would ask another nurse! You let go almost simultaneously with the injection- just a split second after you start pushing the green button. Otherwise I would feel like I might hit the wrong things!

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Hi. I was just as terrified when I started reading about side effects, but I really didn’t have a choice, since I had experienced multiple vertebrae and rib fractures and the pain I had endured was something I could not get used to (nobody should try to get used to living like that).
Postponing treatment got me to a -4.3 (vertebrae) and -3.2 (hip) Dexa.
I had read in these groups about people starting Tymlos on a lower dose and working their way to the 80 mcg mark, and asked my doctors. They said they weren’t opposed as long as I moved fast into the full dose (a couple of weeks at the most), so I started my Tymlos last Tuesday at 3 clicks. I had 2 days at 3, 2 days at 4 and am moving to 5 clicks today.
This not only gave me the chance to adjust to the medication and the injection routine, but eased my fears.

Every medication has potentially serious effects (if you read aspirin’s full list of possible side effects, you might not take another one).

My experience with Tymlos so dar has been excellent. Very slight heart palpitations the first two days, for about 40-45 minutes, and a very slight dizzy sensation the day I moved to 4 clicks. Nothing else so far.

I would advise that you discuss with your doctor the possibility of starting low and working your way to the full dose. It has helped me a lot.

Also, I prepared a little table where I write every dose, time, effects, etc. to share with my doctors. It is in Spanish, but I’ll share it hoping it might be useful to you or anyone.

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@lnl

I 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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Thank you to much for the information. It really helps to know what to expect. I am going to try and start Tymlos soon because I can't manage the Forteo. They don't have a stepped dose so it is killing me and I can't stand the side effects which are much worse than those I have heard about with Tymlos. Wish they had a pill for the side effects!! LOL...of course that would be asking for Big Pharma to pay attention!!!

Good luck with your next 17 months.
PJ in San Jose

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@mspatart

Thank you to much for the information. It really helps to know what to expect. I am going to try and start Tymlos soon because I can't manage the Forteo. They don't have a stepped dose so it is killing me and I can't stand the side effects which are much worse than those I have heard about with Tymlos. Wish they had a pill for the side effects!! LOL...of course that would be asking for Big Pharma to pay attention!!!

Good luck with your next 17 months.
PJ in San Jose

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And good luck to you on Tymlos. You never know. Some people report a big nothing. I hope that is the case for you.

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I have had no side effects from Tymlos after three months.

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@mspatart

Thank you to much for the information. It really helps to know what to expect. I am going to try and start Tymlos soon because I can't manage the Forteo. They don't have a stepped dose so it is killing me and I can't stand the side effects which are much worse than those I have heard about with Tymlos. Wish they had a pill for the side effects!! LOL...of course that would be asking for Big Pharma to pay attention!!!

Good luck with your next 17 months.
PJ in San Jose

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Testimonial: I'm at 6 weeks and no side effects from Tymlos. I used so much energy worrying about giving myself injections, I had nothing left in my body that could be effected 🙂 And, I do need to give credit to my neighbor, a nurse. She came over the first 4 evenings and talked me through the process.

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