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!

@arlene7

Hi Chris,
Thank you so much for your reply. Currently, I am still pursuing the approval from my insurance company for Evenity, even after three denials. My fear of needles is overwhelming, considering that I would need to inject myself on a daily basis. Also Evenity is known to build bones especially in the spinal area, where I seem to have most of my bone loss. Therefore, my preference would be Evenity. It is so disappointing dealing with insurance companies, however I won’t give up!

My doctor has restricted my lifting to 15 pounds, no bike rides, or participation in other activities with risks of falling. As a very active person and a new grandmother it worries me to have these restrictions. I want to enjoy my grandchildren fully, and I now have to be so careful to avoid falls. Luckily, I have not had any fractures and have found myself being so cautious about everything I do. Trying my best to avoid any falls.

I was also diagnosed with idiopathic hypocalciuria, which I guess is why I have weak bones. Was prescribed a diuretic, but holding off on taking because it has sulfa and I was allergic to sulfa at a younger age. Want to visit an allergist first but with the corona virus I do not want to visits a doctor quite yet.

Hopefully I will hear back from my insurance company by the end of this week and can begin my journey.

As a side note, both my mother and grandmother had osteopenia but not severe.

Thanks again for your support.
-Arlene

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I thought that Evenity was a monthly injection given in the doctor's office.

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@ritafarmer, thanks for your reply. Curious to see why you did a bone density test at 41? My biggest concern is my daughter; since this is genetic, I would love to see what she can do now to prevent this in the future. What medicines have you been on for 20 years? I believe that Evenity can only be taken for one year. I am only walking now, but looking into strengthening exercises.

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@ritafarmer

I thought that Evenity was a monthly injection given in the doctor's office.

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Yes, it is….

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@artscaping

@arlene7, Good afternoon. Welcome to Connect. I am very interested in your information about Evenity and your choice of Tymlos or Forteo because of insurance. I have chosen to answer you publicly because on Connect, sharing patient information and experiences is our modus operandi. Right now members share osteoporosis stories, questions, and experiences so that we can have current information of great value for our members which I hope includes you.

So please share your decision with us and the reasons for your choice. If you learn other things please update us.

I am sorry about your diagnosis of "severe" osteoporosis at that very young age of 62. It was obviously a big shock for me even at 76. I am 78 now and am just completing one year of Tymlos. You, @arlene7, have a lot of catching up to do……because like me you do not want to have any fractures. Do you have spinal fractures now?

I chose Tymlos after very bad side effects with bisphosphonates. The injection procedure is very simple. It quickly becomes second nature. You may want to talk to your doctor about a morning or evening injection. My preference is the morning because I would forget at night. How may we continue to be supportive? And I don't know about your lifestyle but am passing along this: Forteo has to be refrigerated 100% of the time. Tymlos is more stable and only needs refrigeration until it is opened. Are you a traveler?

May you be safe and protected.
Chris

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@arlene7 I'm on Tymlos too. They told me for 2 years, but my endocrinologist whats me to ask my surgeon if I can go off of it after I heal from my spine surgery and then they would start me on something else. It does make me fatigued, but I may be fatigued from the pain I have Tests done next Monday for surgeries on June 9th and 11th.

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@arlene7

@ritafarmer, thanks for your reply. Curious to see why you did a bone density test at 41? My biggest concern is my daughter; since this is genetic, I would love to see what she can do now to prevent this in the future. What medicines have you been on for 20 years? I believe that Evenity can only be taken for one year. I am only walking now, but looking into strengthening exercises.

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I was already being seen by a rheumatologist for early onset osteoarthritis He was doing research on osteoporosis. I had an unexplained stress fracture in a foot. I initially saw a different doctor because my doctor was out of town. I asked him about osteoporosis, and he dismissed it. When I saw my doctor for a follow-up, HE brought up osteoporosis before I did and wanted to do a DEXA, which I readily agreed to. I still remember his comments when he back with my DEXA results: "I'm so glad that we did this." I'm lucky that he was my doctor. He left the practice and assigned me to another doctor. She has said that she would never have ordered a DEXA for a stress fracture in a foot because "people get stress fractures all the time."

Now, regarding drugs–i was on Fosamax for several years. My bone density initially went up, but then it started to go back down. By this time, I was under the care of the second doctor. At this time, I presented a problem because I was premenopausal. My doctor wanted to use Forteo, but since I was premenopausal, I had to have a major bone fracture (fingers and toes didn't count). I remembered that I had a freak accident in a hotel room in Atlanta, Georgia, where I bumped into a sharp corner on a cabinet and broke a rib. That was a major bone fracture. It was approved by my insurance company, and I was on it for two years. I am very thankful that I was on it before I was old enough to be on a Medicare prescription drug plan. I hit the max on my drug copay very quickly as I was on another, very expensive monthly injection for asthma. As with most people, I had a big increase in bone density while on Forteo. After the two years of Forteo, I was on Reclst for several years. I had some small increases. I have been on Prolia for 6 years, and it was on this drug that I have finally moved into osteopenia. I have an appointment in two weeks where I have another DEXA, and based on the results, we will determine a strategy going forward.

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@ritafarme Maybe Im missing something here but you said you finally moved into osteopenia? Most people have osteopenia then go into osteoporosis . You also said this Dr was researching osteoporosis and wanted to do a dexa scan but didnt say if it showed Osteoporosis so am I missing something here ? I had osteopenia for 10 years before I was diagnosed with thinning bones but report did,nt say I had osteoporosis so Im airing on the side of caution

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@ritafarmer

I was already being seen by a rheumatologist for early onset osteoarthritis He was doing research on osteoporosis. I had an unexplained stress fracture in a foot. I initially saw a different doctor because my doctor was out of town. I asked him about osteoporosis, and he dismissed it. When I saw my doctor for a follow-up, HE brought up osteoporosis before I did and wanted to do a DEXA, which I readily agreed to. I still remember his comments when he back with my DEXA results: "I'm so glad that we did this." I'm lucky that he was my doctor. He left the practice and assigned me to another doctor. She has said that she would never have ordered a DEXA for a stress fracture in a foot because "people get stress fractures all the time."

Now, regarding drugs–i was on Fosamax for several years. My bone density initially went up, but then it started to go back down. By this time, I was under the care of the second doctor. At this time, I presented a problem because I was premenopausal. My doctor wanted to use Forteo, but since I was premenopausal, I had to have a major bone fracture (fingers and toes didn't count). I remembered that I had a freak accident in a hotel room in Atlanta, Georgia, where I bumped into a sharp corner on a cabinet and broke a rib. That was a major bone fracture. It was approved by my insurance company, and I was on it for two years. I am very thankful that I was on it before I was old enough to be on a Medicare prescription drug plan. I hit the max on my drug copay very quickly as I was on another, very expensive monthly injection for asthma. As with most people, I had a big increase in bone density while on Forteo. After the two years of Forteo, I was on Reclst for several years. I had some small increases. I have been on Prolia for 6 years, and it was on this drug that I have finally moved into osteopenia. I have an appointment in two weeks where I have another DEXA, and based on the results, we will determine a strategy going forward.

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So glad you have improved! I have found through the years that we have to be our best advocates and find doctors that listen to all our concerns.

Great news on my end today….my insurance finally approved my for Evenity! This is a once a month injection. I am keeping my fingers crossed for good results.

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@arlene7

So glad you have improved! I have found through the years that we have to be our best advocates and find doctors that listen to all our concerns.

Great news on my end today….my insurance finally approved my for Evenity! This is a once a month injection. I am keeping my fingers crossed for good results.

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Congratulations. I hope Evenity works for you. The concept is appealing from those of us who want and need a product the does more than one thing. Be happy and content.
Chris

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@lioness

@ritafarme Maybe Im missing something here but you said you finally moved into osteopenia? Most people have osteopenia then go into osteoporosis . You also said this Dr was researching osteoporosis and wanted to do a dexa scan but didnt say if it showed Osteoporosis so am I missing something here ? I had osteopenia for 10 years before I was diagnosed with thinning bones but report did,nt say I had osteoporosis so Im airing on the side of caution

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@lioness I think @ritafarmer is saying that the drugs improved her bone density and put her back at the level of osteopenia rather than where she had been, with osteoporosis.
JK

Liked by lioness

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@lioness

@ritafarme Maybe Im missing something here but you said you finally moved into osteopenia? Most people have osteopenia then go into osteoporosis . You also said this Dr was researching osteoporosis and wanted to do a dexa scan but didnt say if it showed Osteoporosis so am I missing something here ? I had osteopenia for 10 years before I was diagnosed with thinning bones but report did,nt say I had osteoporosis so Im airing on the side of caution

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My first DEXA at the age of 41 showed severe osteoporosis. My doctor concluded that I was in a vulnerable group (white, petite, small-boned, Europesn ancestry).and that my steroid asthma inhaler and the occasion use of oral steroids caused the severe osteoporosis so early. When first introduced, the steroid asthma inhalers were believed to not have any "systemic" effects as was the case with oral steroids. However, when I read the full prescribing information for the inhaler, I saw that there was a statistically significant increase in fractures in the group of people who took the drug compared to those who not taking the drug. I guess that there ARE some systemic effects. But I have to breathe. I now also use a steroid nasal inhaler, and I use steroid eye drops to prevent rejection of my cornea transplants. So, "the deck is stacked against me."

After 20 years of treatment, my bone mass has increased enough that I am technically classified as osteopenia. I can still be treated because my original diagnosis was osteoporosis. Thank you for asking. I didn't realize that this would confuse anyone. I have been "anything but normal" for most of my life.

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@contentandwell

@lioness I think @ritafarmer is saying that the drugs improved her bone density and put her back at the level of osteopenia rather than where she had been, with osteoporosis.
JK

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That's correct!

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@ritafarmer

My first DEXA at the age of 41 showed severe osteoporosis. My doctor concluded that I was in a vulnerable group (white, petite, small-boned, Europesn ancestry).and that my steroid asthma inhaler and the occasion use of oral steroids caused the severe osteoporosis so early. When first introduced, the steroid asthma inhalers were believed to not have any "systemic" effects as was the case with oral steroids. However, when I read the full prescribing information for the inhaler, I saw that there was a statistically significant increase in fractures in the group of people who took the drug compared to those who not taking the drug. I guess that there ARE some systemic effects. But I have to breathe. I now also use a steroid nasal inhaler, and I use steroid eye drops to prevent rejection of my cornea transplants. So, "the deck is stacked against me."

After 20 years of treatment, my bone mass has increased enough that I am technically classified as osteopenia. I can still be treated because my original diagnosis was osteoporosis. Thank you for asking. I didn't realize that this would confuse anyone. I have been "anything but normal" for most of my life.

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@ritafarmer Thank you for your explanation I just never heard of this before . Im glad you where diagnosed now with osteopenia . Since I had osteopenia before now I want aware that you could be classified with it after the med you where on .

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@lilypaws

@arlene7 I'm on Tymlos too. They told me for 2 years, but my endocrinologist whats me to ask my surgeon if I can go off of it after I heal from my spine surgery and then they would start me on something else. It does make me fatigued, but I may be fatigued from the pain I have Tests done next Monday for surgeries on June 9th and 11th.

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I will hopefully start on Evenity soon. So sorry you're in pain…hoping your surgeries go well!

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@arlene7

I will hopefully start on Evenity soon. So sorry you're in pain…hoping your surgeries go well!

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@arlene7 I was thinking about you and wondering if you were able to start on Evenity? How are you feeling?
@lilypaws I read that you are having surgery today and the 11th of June. I am sending you good thoughts- please let us know how you are when you are at a point that you can.

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@kellyhahn1

@arlene7 I was thinking about you and wondering if you were able to start on Evenity? How are you feeling?
@lilypaws I read that you are having surgery today and the 11th of June. I am sending you good thoughts- please let us know how you are when you are at a point that you can.

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thanks for asking….actually with all the insurance issues that I have had, I am hoping to hear soon for my first injection. Will definitely report back after first injection.

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