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.

@windyshores

@sudsie58 my bone marker testing showed that Tymlos had stopped working at 18 months. Some of us are wondering if we can do more anabolic treatment after "locking in" gains so far with a bisphosphonate. Some posters have said that taking a break from Forteo or Tymlos will result in the medication working again. I plan on asking my endocrinologist about this next time.

These meds do improve bone quality and it is always possible that that effect continues past 18 months.

If your bone density has never been worse than -2.8 you have been in better shape than some of us! Did you get insurance approval for Forteo because of your surgery needs?

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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.

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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.....

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@loriesco

The horrible side effects means it has something to work on in your body. It means your immune system is ramping up and effectively doing something that is why I didn’t jump ship and when I was offered the other medication‘s, I looked them up and they weren’t as good so I decided to suck it up and Stay on the TMLOS. You are lumping all the medication‘s into one box. Maybe that’s all you have time for, but it would be better. If you lucked up all the medicines individually most people do not realize how different they actually are my dentist. lumped lump TYMLOS with the biphosphonates. And it is not! I hope you will stick with the TYMLOS until you get rid of the headaches. They go away. You can titrate up meaning start at two clicks and work your way up to eight it’s gentler that way some people stay on a partial dose the whole time, the medicine I am on the TYMLOS is only for two years and then I do a Reclast infusion once a year for three years and then I’m done for life. I went into menopause early at 47. I was on bio identical hormones for 10 years. I might start up again. I’m looking for a hormone specialist because my endocrinologist won’t deal with it I think your idea to use the HRT is a good one! I think you should work with the doctor or a specialist to get the testing all of it – the DEXA, the PNP, the CXT and monitor your bone density as you age. The side effects go away for most of us after two months you know what they say - no pain no gain. my life changed when the surgeon opened up my neck and the bones were paper. Thin and C5 fell apart. It meant they couldn’t do the cervical spine surgery as we had all hoped. I had done all the testing, but there are things which can’t be determined and you just gotta deal with it when it shows up, the bones in my forearm are strong and show no weakness. However, the bones that are in my neck aren’t worth shit. The bones in my lumbar were just fine when they did the surgery six years ago, so you never know. I’d rather be safe than sorry. That is why I’m putting up with the medication , I read all the reports and the reports now confirm all the testing that was done in 2017. There’s a lot of information here. I hope you get to it because many of us have asked these questions before and they’ve been answered by other members and there’s great information here. Good luck .

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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.

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@amysue1949

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.

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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.

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@loriesco

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.

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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!!

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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?

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@laurieruns26

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?

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@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.

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@laurieruns26

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?

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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.

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@amysue1949

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.

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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.

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@kar50

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.

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Please keep us posted on your experience once you have the Reclast infusion. Thanks.

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