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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

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willowmena | @willowmena | 1 day ago
In reply to @wilweten "@willowmena This article "The Risk of Developing Osteosarcoma After Teriparatide Use: A Systematic Review" might be..." + (show)
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@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."

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@wilweten I haven't done any research on Forteo which I guess was in development long before Tymlos. Did their clinical trials/studies also find problems in lab rats?

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WilWeten | @wilweten | 1 day ago
In reply to @willowmena "@wilweten I haven't done any research on Forteo which I guess was in development long before..." + (show)
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@wilweten I haven't done any research on Forteo which I guess was in development long before Tymlos. Did their clinical trials/studies also find problems in lab rats?

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@willowmena Forteo has been on the market in the US since 2002 and Tymlos since 2017.

And yes, osteosarcoma happened with lab rats who got long time heavy overdoses of Forteo.

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WilWeten | @wilweten | 1 day ago
In reply to @willowmena "@wilweten I guess it depends on what is considered "long term" for post marketing. I believe..." + (show)
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@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.

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@willowmena I agree, I don't find 4 years 'long term' either. On the other hand, Forteo, which has many characteristics of Tymlos, has been on the market since 2002, and I guess that as the use of Forteo didn't enhance the chance of humans getting osteosarcoma, the risk of getting it from Tymlos was deemed nihil as well.

I'm on Tymlos too.

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justme34 | @justme34 | 1 day ago
In reply to @loriesco "@lori62yb it takes 2 months to get over the sides effects. Then like magic it disappears...." + (show)
Profile picture for loriesco @loriesco

@lori62yb it takes 2 months to get over the sides effects. Then like magic it disappears. Titrate up starting with a lower dose. I had to go back and do that (with my doctors permission of course). Just finishing 2 years. After I adjusted it all flew by.

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@loriesco

I just started yesterday. I only did 2 clicks, because I was recently diagnosed with BPPV and vertigo. I hope the 2nd click is 20 mcg. How do you know? It started at "0" and then I think I went to the second click and injected. The second click had the two arrows. Is this correct? My heart was racing and I felt dizzy for 45 minutes. I also felt very fatigued and it was hard to sleep last night. I took my first dose at 12:15 PM yesterday. Can someone please explain how to start out with the lower does (20 mcg)? My pen only goes from "0" then two arrows and I think a dot and then 80 Mcg.

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2 replies
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boneoptimist | @boneoptimist | 1 day ago
In reply to @justme34 "@loriesco I just started yesterday. I only did 2 clicks, because I was recently diagnosed with..." + (show)
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@loriesco

I just started yesterday. I only did 2 clicks, because I was recently diagnosed with BPPV and vertigo. I hope the 2nd click is 20 mcg. How do you know? It started at "0" and then I think I went to the second click and injected. The second click had the two arrows. Is this correct? My heart was racing and I felt dizzy for 45 minutes. I also felt very fatigued and it was hard to sleep last night. I took my first dose at 12:15 PM yesterday. Can someone please explain how to start out with the lower does (20 mcg)? My pen only goes from "0" then two arrows and I think a dot and then 80 Mcg.

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Hi @justme34, each click is 10 mcg. To test it, you can click thru to 8 clicks, then just twist it back to 0. Sometimes I lose count, but back it up to 0, and start counting clicks again. I got very sick for 2 days when I tried the full 8 clicks originally, so i restarted at 1 click for 2-3 days, then 2 clicks for 2-3 days, etc. I've been on it 11 months, but can't really get higher than 5 clicks, and my Dr said that's okay to stay at for now. I've had great results on it, so give your body time to adapt. Drink lots of liquid when you inject. I switched to afternoon injections so I don't have to get up to pee.

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justme34 | @justme34 | 1 day ago
In reply to @boneoptimist "Hi @justme34, each click is 10 mcg. To test it, you can click thru to 8..." + (show)
Profile picture for boneoptimist @boneoptimist

Hi @justme34, each click is 10 mcg. To test it, you can click thru to 8 clicks, then just twist it back to 0. Sometimes I lose count, but back it up to 0, and start counting clicks again. I got very sick for 2 days when I tried the full 8 clicks originally, so i restarted at 1 click for 2-3 days, then 2 clicks for 2-3 days, etc. I've been on it 11 months, but can't really get higher than 5 clicks, and my Dr said that's okay to stay at for now. I've had great results on it, so give your body time to adapt. Drink lots of liquid when you inject. I switched to afternoon injections so I don't have to get up to pee.

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@boneoptimist Thank you so much! I'm sorry you got sick for 2 days when you tried the full dose. I will try the 1 click for 2 to 3 days and then slowly increase the clicks. I will make sure to drink a lot of water. That's great news that you have had great results on it!

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jsakamoto | @jsakamoto | 1 day ago
In reply to @lori62yb "@bharris202 Hi! My pen is only set up for 80mcg click. I click, count to 10..." + (show)
Profile picture for lori62yb @lori62yb

@bharris202 Hi! My pen is only set up for 80mcg click. I click, count to 10 and pull it out. I’m 5’3 120 pounds. I’ll ask my doctor about the dose. I’m doing daily injections for 2 years.

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@lori62yblori62yb
Me too! count to 10 and done. Don't know about clicks. I'm 5'3 and 95 lb.
Does that matter?

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boneoptimist | @boneoptimist | 22 hours ago
In reply to @jsakamoto "@lori62yblori62yb Me too! count to 10 and done. Don't know about clicks. I'm 5'3 and 95..." + (show)
Profile picture for jsakamoto @jsakamoto

@lori62yblori62yb
Me too! count to 10 and done. Don't know about clicks. I'm 5'3 and 95 lb.
Does that matter?

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@jsakamoto The Drs say it doesn't matter about body size, but each body is different on how it metabolizes the drug. If you are able to tolerate the full dose, lucky you! Good luck on your OP journey!

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loriesco | @loriesco | 21 hours ago
In reply to @justme34 "@loriesco I just started yesterday. I only did 2 clicks, because I was recently diagnosed with..." + (show)
Profile picture for justme34 @justme34

@loriesco

I just started yesterday. I only did 2 clicks, because I was recently diagnosed with BPPV and vertigo. I hope the 2nd click is 20 mcg. How do you know? It started at "0" and then I think I went to the second click and injected. The second click had the two arrows. Is this correct? My heart was racing and I felt dizzy for 45 minutes. I also felt very fatigued and it was hard to sleep last night. I took my first dose at 12:15 PM yesterday. Can someone please explain how to start out with the lower does (20 mcg)? My pen only goes from "0" then two arrows and I think a dot and then 80 Mcg.

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@justme34 yes you got it right I just went over and looked at my pen. When I started, I also had severe reactions, but then it went away. It sounds like you have not read the leaflet information or spoken with your doctor which I recommend both. I also recommend that you call the pharmaceutical company. They have a helpline if you have questions after reading the literature. It is important to try different times of day. I started out in the morning, but I got severely nauseous and dizzy and so I went to the evening after dinner. I’m not that active after dinner so I just kind of settled in. I always make space around trying new medicines and it sounds like you had the classic side effects. I’m sure it will get better!

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loriesco | @loriesco | 20 hours ago

My doctor said that after two months, the side effects magically go away and honestly they did. I did start restart titrating up and it was much better. I am active too during the day so I switched my injections to the evening where I tolerated them much better after dinner. I was nauseous and fatigued during the day hours. Hang in there and try some different things take some Tylenol and drink lots of water before injecting. See if that helps you.

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