Tymlos Side effects

Posted by lori62yb @lori62yb, Aug 6 9:57am

Hello! I started taking Tymlos injections 5 days ago and almost immediately got a headache across my forehead. It lasted a few hours and I did dose with Tylenol. The next morning, I began to have facial pain, like I was suffering from allergies. The bigger issue, is I’ve suffered from severe dry eye for 10 years. I use Restasis daily, and have had some dissolving plugs put in recently, to help with the dryness. Since starting Tymlos, my dry eye is out of control and unbearable. I’m unable to sleep, with the eye pain and the headache, that is also in my cheeekbones.
I’ve had osteoporosis since I was 45, and have done infusions over the years. At 64 my Rheumatologist wanted me to try a bone builder, but I can’t do this much longer. She had wanted me to take a different medication, but my insurance said I had to try Tymlos first.
Any help you can offer, will be much appreciated. I’m an active 64 year old, riding my Peloton bike and lifting weights, I just want to continue this lifestyle, without feeling awful on a medication.
Thank you, Lori

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

Profile picture for CathyF31 @cathyf31

@loriesco Yes, in constant contact with my health provider. And yes, clear indications of having an allergic/immune system response to the medication. Not necessary to get into details, but this is my last med that can be used, before having to default to Reclast, which my provider and I are even more concerned about. Again, not necessary for me to get into all the details, but I am not willing to lose the possibility of remaining on my anabolic (yet), before having to raise the white flag and seal in my current status with the Reclast. No bueno situation.

Jump to this post

@cathyf31 You don't use any of these for the "rest" of your life. Have you tried all of the various classes of the anabolics? I was one of the rare people with an inflammatory reaction to the Reclast. (antiresorptive). So they quickly switched me into the TYMLOS. Now that I am finishing they will quickly do the infusion (to lock in the gains) of the TYMLOS. but only one 1/100 of the rare people who had the first reaction will have it a second time. PLUS there is so much they can prepare me with: advance hydration, advance NSAIDs, advance steroid (yuck but for 3 days it won't kill me) and 25% of the medication! They can lower the dose and we can still achieve the same milestones! PLUS they can slow the infusion from 30 minutes to an hour and a half. remember that a disportionate amount of people are here with medication reactions. You don't hear from the 99+% of people who have no reaction! so it looks worse than it may be. But IF you are the .0002 who have the bad reaction that is all we need to be discouraged. My bones fell apart in surgery. That is enough to keep me pushing at this. IF you decide it really isn't for you maybe you can work with the BHRT Hormones are the way to go for naturally stimulating bone production along with resistance training. That really works to pound the nutrients into your bones. My strongest bones are the ones which get the resistance training. Hang in there!

REPLY
Profile picture for loriesco @loriesco

@cathyf31 You don't use any of these for the "rest" of your life. Have you tried all of the various classes of the anabolics? I was one of the rare people with an inflammatory reaction to the Reclast. (antiresorptive). So they quickly switched me into the TYMLOS. Now that I am finishing they will quickly do the infusion (to lock in the gains) of the TYMLOS. but only one 1/100 of the rare people who had the first reaction will have it a second time. PLUS there is so much they can prepare me with: advance hydration, advance NSAIDs, advance steroid (yuck but for 3 days it won't kill me) and 25% of the medication! They can lower the dose and we can still achieve the same milestones! PLUS they can slow the infusion from 30 minutes to an hour and a half. remember that a disportionate amount of people are here with medication reactions. You don't hear from the 99+% of people who have no reaction! so it looks worse than it may be. But IF you are the .0002 who have the bad reaction that is all we need to be discouraged. My bones fell apart in surgery. That is enough to keep me pushing at this. IF you decide it really isn't for you maybe you can work with the BHRT Hormones are the way to go for naturally stimulating bone production along with resistance training. That really works to pound the nutrients into your bones. My strongest bones are the ones which get the resistance training. Hang in there!

Jump to this post

@loriesco Reclast will be my only option due to my medical history and previously failed treatments. Other therapies (including HRT) and treatments are not options for me. Take care and good luck.

REPLY
Profile picture for willowmena @willowmena

@cathyf31 I wonder what other information they have managed to withhold or conceal. Approx 80% of the male rats developed bone cancer when administered high doses of the meds. I don't trust the "standard" dose to be safe for everyone.

Jump to this post

@willowmena These rats got 3 times the amount per kilo that humans get and also got that from the beginning of their lives and onwards. So, that's a massive overdose for a long time...

REPLY
Profile picture for WilWeten @wilweten

@willowmena These rats got 3 times the amount per kilo that humans get and also got that from the beginning of their lives and onwards. So, that's a massive overdose for a long time...

Jump to this post

@wilweten but I question the data and how humans respond to the maximum dose of 80 mcg. When I looked at results from clinical trials it gave data on many conditions that participants experienced, none of it actually an outcome of the medication apparently, but I don't recall seeing meaningful data on bone cancer. As for the rats, even at lower doses, a certain percentage of them developed bone cancer, just a lower percentage.

REPLY
Profile picture for WilWeten @wilweten

@willowmena These rats got 3 times the amount per kilo that humans get and also got that from the beginning of their lives and onwards. So, that's a massive overdose for a long time...

Jump to this post

@wilweten Taken from online research: During drug testing, Tymlos (abaloparatide) caused a dose-dependent increase in a rare type of bone cancer called osteosarcoma in both male and female rats at exposures 4 to 28 times human levels. "It remains unknown if this risk applies to humans"

REPLY
Profile picture for willowmena @willowmena

@cathyf31 I wonder what other information they have managed to withhold or conceal. Approx 80% of the male rats developed bone cancer when administered high doses of the meds. I don't trust the "standard" dose to be safe for everyone.

Jump to this post

@willowmena I read that they started the TYLMLOS on the rats when they were young. Rats only live about two-4 years so I didn’t pay any attention to that study.
If we were given the drug most of our life, we might get the side effects.
I watched so many YouTubes on the subject and a Dr talked about that and he has no connection to the study.

REPLY
Profile picture for willowmena @willowmena

@wilweten Taken from online research: During drug testing, Tymlos (abaloparatide) caused a dose-dependent increase in a rare type of bone cancer called osteosarcoma in both male and female rats at exposures 4 to 28 times human levels. "It remains unknown if this risk applies to humans"

Jump to this post

@willowmena
You may like to read this article: https://www.biospace.com/radius-announces-update-on-tymlos-abaloparatide-label published 23 December 2023: it starts with

"Radius Health, Inc. (“Radius” or the “Company”) (NASDAQ: RDUS) today announced that the U.S. Food and Drug Administration (FDA) has approved updates to the TYMLOS label.
FDA approved the removal of the boxed warning from the TYMLOS label, effective December 22, 2021
The boxed warning had referred to the potential risk of osteosarcoma
Action follows review of long-term post-marketing data for TYMLOS and PTH class of drugs."

REPLY
Profile picture for willowmena @willowmena

@wilweten but I question the data and how humans respond to the maximum dose of 80 mcg. When I looked at results from clinical trials it gave data on many conditions that participants experienced, none of it actually an outcome of the medication apparently, but I don't recall seeing meaningful data on bone cancer. As for the rats, even at lower doses, a certain percentage of them developed bone cancer, just a lower percentage.

Jump to this post

@willowmena This article "The Risk of Developing Osteosarcoma After Teriparatide Use: A Systematic Review" might be of interest to you: https://pmc.ncbi.nlm.nih.gov/articles/PMC10544053/

Yes, it's not about abaloparatide, but about teriparatide, which has a lot in common with abaloparatide. And yes, the situation may not crystal clear, but it looks rather positive. However, if my situation wasn't so severe, I wouldn't dream of taking the risks of osteoporosis medicine...

It says e.g.: "clinical trials and post-marketing surveillance studies did not demonstrate any increased risk of osteosarcoma, even after prolonged periods of surveillance reaching up to 15 years, with most of the identified cases of osteosarcomas being solitary and predominantly attributed to other factors. This systematic review provides a comprehensive overview of the currently available literature and provides the highest level of clinical evidence towards demonstrating the lack of any substantial evidence towards osteosarcoma development in patients utilizing TPTD."

REPLY

Lori, try drinking lots of liquid when you do your shot. I too suffered with the full dose-headache, vomiting, slight fever. The rise in calcium from the drug causes you to pee more, which will dehydrate you if you don't compensate. I've noticed I pee more, I sweat copiously (I have never been a sweater and I live in Florida), and I blow my nose more (I've been on Tymlos for 11 months).
To get around my headache/nausea I re-started my shots at 1 click for 2-3 days, then went to 2 clicks, then 3 etc. I can only do 5 clicks. I inject at 3pm each day and lie down and drink lots of water for 30 minutes. I've tried 6 clicks, but my heart pulse rate will shoot up to 150-160 (IN MY SLEEP, 8-9 hours after injection!). My Dr said staying at 5 is fine. It's totally worth the effort. I've gone from -2.2 total spine to -1.7 in 11 months, never the full dose (I do exercise, supplements, nutrition also). I will intermittently try 6 clicks to see if I can get there 🙂 My mom had a jaw like swill cheese after Fosamax, so I refused that line of drugs, so Tymlos was really worth the effort for me. Good luck!

REPLY
Profile picture for WilWeten @wilweten

@willowmena
You may like to read this article: https://www.biospace.com/radius-announces-update-on-tymlos-abaloparatide-label published 23 December 2023: it starts with

"Radius Health, Inc. (“Radius” or the “Company”) (NASDAQ: RDUS) today announced that the U.S. Food and Drug Administration (FDA) has approved updates to the TYMLOS label.
FDA approved the removal of the boxed warning from the TYMLOS label, effective December 22, 2021
The boxed warning had referred to the potential risk of osteosarcoma
Action follows review of long-term post-marketing data for TYMLOS and PTH class of drugs."

Jump to this post

@wilweten I guess it depends on what is considered "long term" for post marketing. I believe Tymlos hit the market in 2017 and 4 years later the boxed warning is removed. I don't feel comfortable with characterizing that as long-term, as much as I want it to be accurate. Even with misgivings, I am continuing Tymlos, albeit at 70 mcg. With severe osteoporosis and malabsorption gastric issues, I don't have many options.

REPLY
Please sign in or register to post a reply.