Forteo vs. Tymlos

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

@cireland

I am afraid of the Reclast — have read so many reports of bad reactions. Women over 65 are more prone to the side affects; I am 80. I'm also concerned about the necrosis of the jaw — I've had many dental problems and am concerned I might be more susceptible. Not sure what I'm going to do after the Tymlos — looking into Chinese herbs and/or a Naturapath — but I have several more months on Tymlos.

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Good evening @cireland and @kdbones, you two have mentioned the big question: What will we do after Tymlos? I am in month 7 with no side effects or reasons to stop the injections at this time. What I like best about Tymlos is that you take this medication one day at a time. I have had a batch of reactions to the once a month dosages that have side effects for which there is nothing you can do. Please share your experiences and findings so that more of our fellow members on Connect may benefit. Be safe and protected. Chris

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@swimchris1271

I am a 64 y/o female with osteoporosis and have been on Tymlos for 8 months now. I had a few days in the beginning of headaches and racing heart rate. I take it at bedtime, no more side effects and easy to administer. My rheumatologist says Tymlos is only to be taken for 18 months. He says he will check my bone density 2 years from my last scan. He wants to start me on something else when I am done, like prolia. I thought I would be done after the Tymlos so I am not happy about that! I've heard of many bad side effects from Prolia. I am also taking 1200 mg of calcium daily and 2,000 units daily of Vitamin D, those I am supposed to take forever. Anyone else done with their Tymlos and having to take other medications now?

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I am 65 female, told I had osteoporosis last December after DEXA scan. Had to postpone neck surgery due to my numbers. Surgeon wants me on Forteo but insurance is fighting it. Actually I’m glad, as it’s giving me time to research and study about all the drugs, side effects, natural alternatives, etc. most all the drugs simply slow down osteoclasts and does not allow the bone to get rid of all bone. So the next scan will show improved bone density but it is only because old bone is still in there. Because old bone remains, preventing new bone from forming there, a person ends up with Brittle bones. Most people with osteoporosis who have fractures have been on some sort of osteoporosis medication. These facts have really made me scared and nervous about wanting to put that stuff in my body.

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I've been on Forteo for 10 months, with a 24-month plan. No side effects that I've been able to notice. I'm 66 years old. I don't know what will happen when I'm done with the Forteo.

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@delongak

I've been on Forteo for 10 months, with a 24-month plan. No side effects that I've been able to notice. I'm 66 years old. I don't know what will happen when I'm done with the Forteo.

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@delongak And that is the big question……what’s next? Please post as you find out more. I will also. Be content and at ease. Chris

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@artscaping

@delongak And that is the big question……what’s next? Please post as you find out more. I will also. Be content and at ease. Chris

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@artscaping Even though my endocrinologist, who is the Director of the Bone Density Center at MGH, tells me that the risks from these drugs are far, far smaller than your risk of a severe, life-changing fracture if you don't take them, I too am still trying to decide. We have some February and March travel plans and then in April I have an MRI to be sure my cancer has not metastasized, so I will do nothing until those things are behind me. In the meantime, I hope to learn more. Her first recommendation is Reclast which seems to be the first recommendation of most doctors. I'm not sure if that's because since it's a yearly infusion it will be simpler overall, or why.
JK

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Hi, I am researching Forteo vs Tymlos and saw your post. I, too, have -3.3 in my spine. My endocrinologist ordered Tymlos for me as it shows vertebrae improvement. But, it is a newer drug in this class.
Can you share your experiences being in Tymlos since you posted.
Thank you!!!

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Good afternoon @salpert, I am assuming your inquiry was directed to me, @artscaping. If not please let me help you find the person you wanted to contact. In the meantime, I want to acknowledge your request by saying, Yes, I am happy to share my experiences with Tymlos. I don't know how definitive my experiences were because my choice of Tymlos was made for the following reasons:

I experienced severe bone pain (ribs, sternum, jaw, eye sockets) from biphosphonates like Boniva, taken as a capsule every 30 days. I was directed to an endocrinologist who did some real searching for fractures as well as the presence of calcium or lack thereof. Tymlos and Forteo both create bone….other medications protect the bone you have. Unfortunately, once you stop with the preserving medications that old bone is problematic. It is better to have new bone or at least that is my only choice.

Tymlos is a daily injectable. It is stable and does not have to be refrigerated like Forteo. As a daily medication, you can opt-out if you have any issues. I don't want to wait for months with pain and discomfort until the medication has left my body.

With Tymlos I had no side effects to speak of. Little nausea in the first few days. I am now on month 7.

If you dig into the reviews and research you will find that the chemical makeup and interactions are different. You may find that information helps with your decision. Tymlos is an 18 month program and Forteo a 24 month program. To save your new bone, it is probable that you will have to use another medication to preserve what you have built.

Ask questions……let me know what you think. Both of these are quite spendy $$$$ so you also need to research the costs given your coverage.

What is your major concern? Have you had fractures? Be content and at ease. Chris

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@artscaping

Good afternoon @salpert, I am assuming your inquiry was directed to me, @artscaping. If not please let me help you find the person you wanted to contact. In the meantime, I want to acknowledge your request by saying, Yes, I am happy to share my experiences with Tymlos. I don't know how definitive my experiences were because my choice of Tymlos was made for the following reasons:

I experienced severe bone pain (ribs, sternum, jaw, eye sockets) from biphosphonates like Boniva, taken as a capsule every 30 days. I was directed to an endocrinologist who did some real searching for fractures as well as the presence of calcium or lack thereof. Tymlos and Forteo both create bone….other medications protect the bone you have. Unfortunately, once you stop with the preserving medications that old bone is problematic. It is better to have new bone or at least that is my only choice.

Tymlos is a daily injectable. It is stable and does not have to be refrigerated like Forteo. As a daily medication, you can opt-out if you have any issues. I don't want to wait for months with pain and discomfort until the medication has left my body.

With Tymlos I had no side effects to speak of. Little nausea in the first few days. I am now on month 7.

If you dig into the reviews and research you will find that the chemical makeup and interactions are different. You may find that information helps with your decision. Tymlos is an 18 month program and Forteo a 24 month program. To save your new bone, it is probable that you will have to use another medication to preserve what you have built.

Ask questions……let me know what you think. Both of these are quite spendy $$$$ so you also need to research the costs given your coverage.

What is your major concern? Have you had fractures? Be content and at ease. Chris

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Thank you for your reply. I am seeing a endocrinologist for severe osteoporosis especially in my spine. She is putting me on Tymlos next week. I know it is newer on the market so I was concerned but reports I have read seem very promising,
I know that I will be put on another bone density drug once I complete the Tymlos cycle.
I appreciate your response and having a format to discuss this issue.
Stay well…thanks a lot!

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@delongak

I've been on Forteo for 10 months, with a 24-month plan. No side effects that I've been able to notice. I'm 66 years old. I don't know what will happen when I'm done with the Forteo.

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I've been told by my doctor (and read on line several places), that IF Forteo works I will have to go onto another drug after coming off it, or any gains I make will disappear. I'm SO scared of the possibility of getting bone cancer from this drug. Is it hard to give yourself shots every day? Are the shots painful? Not sure I can do that!! Have you had a DEXA scan since starting Forteo?

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I'm just finishing my first year of Forteo and do expect to use something else after I'm done. The shots are given with a VERY fine needle and I usually can't feel them at all. Bone cancer has only been observed in lab rats, not humans, in connection with larger doses than humans get.

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@delongak, Thank you for your contribution and for verifying that you will have a choice for the after Forteo treatment. I will double down on the needles….they are so fine I need a magnifying glass to see them. Be safe and protected. Chris

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@salpert

Hi, I am researching Forteo vs Tymlos and saw your post. I, too, have -3.3 in my spine. My endocrinologist ordered Tymlos for me as it shows vertebrae improvement. But, it is a newer drug in this class.
Can you share your experiences being in Tymlos since you posted.
Thank you!!!

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Hello, I've been on Tymlos 4 months. While my calcium blood tests have improved, I've been told I will have to stay on Tymlos for 18-24 months! The side effects I've experienced are mainly stomach pain and fatigue. Some days, are good and some are quite difficult. Unfortunately, my score was 4.3 and there were not other options that could build bone within a relatively short period of time. The problem is that the Tymlos treatment, if successful, will bring my osteoporosis level to 2.5. This means I have to be on some type of injection or infusion program for the rest of my life. Paper thin bones does not allow for any type of surgery requiring hardware. Only time will tell whether this treatment is successful or not! I do not give myself the injections, my husband does it for me. Since a limited part of the abdomen is the area designated for the shots, a lot of scaring makes self injection quite challenging. Hope this info helps! Sherry

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Hi, @curlylocks, it's been a few months since I have seen that name at the top of the post. Thanks so much for your contribution, It is your ongoing experience with Tymlos that helps new folks be able to look a bit further down the pike. Hope you are well….Please keep us updated. I think we are all learning a lot. Chris

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@curlylocks

Hello, I've been on Tymlos 4 months. While my calcium blood tests have improved, I've been told I will have to stay on Tymlos for 18-24 months! The side effects I've experienced are mainly stomach pain and fatigue. Some days, are good and some are quite difficult. Unfortunately, my score was 4.3 and there were not other options that could build bone within a relatively short period of time. The problem is that the Tymlos treatment, if successful, will bring my osteoporosis level to 2.5. This means I have to be on some type of injection or infusion program for the rest of my life. Paper thin bones does not allow for any type of surgery requiring hardware. Only time will tell whether this treatment is successful or not! I do not give myself the injections, my husband does it for me. Since a limited part of the abdomen is the area designated for the shots, a lot of scaring makes self injection quite challenging. Hope this info helps! Sherry

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Do you know what is causing your osteoporosis? Also, has your doctor talked with you about the difference between low bone density and bone strength? You can actually have low bone density but have very strong bone on the outside. They can actually do tests to test your trabecular bone scores…. My surgeon told me he's afraid of doing neck surgery while I have a DEXA score of -3.8 But when I saw the bone doctor, he said my history looks great….diet/supplementation/blood work/family history. I'm small build but lift weights, do OsteoStrong, eat very clean, etc. He said I have great bone strength, so just increase my Vita D and Calcium/magnesium. Now that I'm off all pharma drugs, that should turn around my DEXA scores. ….. Just a thought.

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@delongak

I'm just finishing my first year of Forteo and do expect to use something else after I'm done. The shots are given with a VERY fine needle and I usually can't feel them at all. Bone cancer has only been observed in lab rats, not humans, in connection with larger doses than humans get.

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I desperately need neck surgery….was supposed to have it last month but it's been put on hold due to surgeon concerned about my bones holding the pins. I'm doing OsteoStrong (have 2 friends who have done it for over a year and pulled themselves out of osteoporosis and almost out of osteopenia). I'm also having to do nerve blocks to help with the pain and don't want to do many more of them….just trying to make it to surgery. That said, I may need to do the Forteo for a few months. …… Actually, there are reports out there now that at least 3 people have developed bone cancer from the Forteo. AND, my husband's cousin came down with breast cancer while on Forteo….coincidence???

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