Starting FORTEO tomorrow and so nervous.

Posted by vkmov @vkmov, Jan 24 1:42am

Any good experiences out there? Worried about serious side effects.

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

@vkmov

Apologies for the delay in responding. I wanted to provide a comprehensive response. Currently, I am under the care of the head of OB/GYN at Georgetown University Hospital for my overall health. Following their recommendation of Forteo, they also mentioned that I could continue with Hormone Replacement Therapy (HRT), which aids in preserving bone density. However, it's worth noting that while HRT helps maintain bone, it may not promote bone growth as rapidly as necessary for my current needs. Additionally, due to variations in the machines used for my recent scans, it's debatable whether I am experiencing bone loss or gain.

My regular gynecologist was initially hesitant to prescribe it back in 2018, citing my age of 68 as a factor. Despite presenting her with studies on transdermal Hormone Replacement Therapy (HRT) conducted on women a decade past menopause, she remained cautious but eventually acquiesced, prescribing the lowest feasible dosage. While HRT undoubtedly assists with various aspects such as hair, skin, and overall energy, and building and preserving bone, she declined to increase the dosage. I believe that had she done so, the extent of my bone loss might have been mitigated. Unfortunately, conducting a comprehensive review of all transdermal HRT studies is beyond my means at the moment. Nonetheless, here are a few noteworthy studies:

ACP Journal: https://www.acpjournals.org/doi/abs/10.7326/0003-4819-117-1-1

American College of Obstetricians and Gynecologists (2020):

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2013/04/postmenopausal-estrogen-therapy-route-of-administration-and-risk-of-venous-thromboembolism which concludes:

The Estrogen and Thromboembolism Risk study, a multicenter case–control study of thromboembolism among postmenopausal women aged 45–70 years, demonstrated an odds ratio for venous thromboembolism in users of oral and transdermal estrogen to be 4.2 (95% CI, 1.5–11.6) and 0.9 (95% CI,0.4–2.1), respectively, when compared with nonusers 10. Transdermal estrogen had no increased risk compared with nonusers. Similar results were reported elsewhere 30 31 32 33 34 35 and of particular importance, in women who were stratified for weight 36 and the presence of prothrombotic mutations

BodyLogic/NAMS/University of Southern California references:
https://www.bodylogicmd.com/blog/should-you-use-hormone-replacement-therapy-after-65-why-attitudes-are-changing/#:~:text=For%20many%20women%2C%20the%20benefits,or%20duration%20of%20hormone%20therapy

“Hormone therapy does not need to be routinely discontinued in women aged older than 60 or 65 years and can be considered for continuation beyond age 65 years for persistent [vasomotor], [quality of life] issues, or prevention of osteoporosis after appropriate evaluation and counseling of benefits and risks.”

Convincing a doctor based solely on a handful of transdermal HRT studies is challenging, especially when the medical community doesn't seem to prioritize conducting its own thorough review. Consequently, the response from most doctors tends to be negative or some variation thereof. However, the doctor at Georgetown did acknowledge that remaining on the lowest dose was likely acceptable. Additionally, they suggested that after my two-year course of Forteo, it might reduce the necessity for a subsequent drug to prevent further bone loss. It's worth mentioning that I am adamantly opposed to taking bisphosphonates under any circumstances.

As previously mentioned, I began low-dose transdermal HRT around the age of 68 and I’m now 74. And yes, the primary reason for initiating this therapy was to mitigate bone loss. Until you brought it up, I hadn't been aware of CTX. Your observation regarding the necessity for a higher dose for bone preservation is valid. The physician at Georgetown advised against increasing the dosage for the time being while I'm on Forteo. However, she expressed a potential willingness to reconsider this decision in two years. Hopefully, by then, there will be increased efforts within the medical community to conduct comprehensive literature reviews and additional studies on the utilization of HRT for postmenopausal women.

Sorry this was so long!

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vkmov, first, no apologies! I'm grateful for your time and effort in providing detailed response and thoughts. I really like to read personal experiences or encounters, and compare them to those described in literature. I've just recently started exploring HRT as an option so I have lots of catchup to do. Coincidently I just got an appointment with my gyn due to a cancelation. Am very eager to hear what she has to say, mainly the risk factors in my case. I also have cardiologist apptmt lined up so I could make some sort of preliminary conclusion before I meet my endo.

Thank you so much for the links, I'll read them all and prepare myself to ask educated questions.

Best of luck to you with forteo therapy!

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@sallyj2

I have just recently started hormone therapy using Estradiol and Estriol and Progrsterone.. I will add Testosterone. My doctors have told me only a tiny dose of hormones is needed. If I decide to start Tymlos, Forteo’s cousin, I will stay on the hormones during and afterwards, likely for life.

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Interesting! I read that estriol is the form that women got during pregnancy, so generally it's not really used for menopausal related issue. Does your physician use it for some particular reason?

May I ask if you are 10 year out from menopausal? If so, what did your doc think about initiating therapy this late in post menopausal? Did your doc use CTX to monitor HRT therapy?

Do you mind sharing the reason of adding testosterone into the HRT mix?

Thanks a lot!

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@vkmov

I started this thread asking for positive experiences with Forteo (as I was very nervous about starting it) a couple of weeks ago prior to starting Forteo, so I wanted to circle back with my experiences. After having 12 shots now, I'm pleased to report I've had virtually NO side effects. I had very very mild nausea and short-term diarrhea the first couple of days that was quickly and easily managed with one Pepto bismol tablet and a ginger gummy! I've had no bone or muscle pains whatsoever. No headaches. No dizzy spells. No increase in belly fat that some have reported. When I started transdermal HRT in 2018, I had an increase in belly fat; however, after using the Forteo shot, it actually seems to have gone down a little. Knock on wood.

Since I live alone with my dog, I don't like to take any kind of new med at night in case of side effects. I'd rather take it in the morning so that if I have any effects, it's broad daylight, everything is open, and I'm not driving around at 10pm trying to find an Urgent Care facility and worrying about my dog. So, I decided to go to my doctor's office for the first shot so they could show me the right way to do it. I videotaped it. Yes, I did. I didn't want to forget anything later when home and alone and nervous again. In the end, the shot is really so very simple, I didn't really need the video but it was a security blanket. Since my first shot in the doc's office was at 2:30 pm, I was able to see how I reacted to it. Over the next couple of days, when I saw I was ok, I gradually shifted my shot to the evening around 8pm. It relaxes me and I find I'm sleeping through the night again and feeling rested in the mornings.

I know everyone is different; we have different medical histories, are on different meds, etc., but with all the scary stuff out there, I wanted to share my positive experience. I was SO afraid of starting any osteo med but now I'm so grateful to have it. I'm also grateful to all of you who took a moment to tell me your positive experiences which gave me the courage to go forward. Thank you! Now I'm hoping it will quickly build bone so I don't have to worry about that any more!

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I was put on Forteo for two years for a crushed spine after kypoplasty. I had to Reclast prescribed at Mayo because I had osteoporosis. I worked very well for me. If you live alone get someone to help you.

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@gravity3

Two years of forteo. Shots easy. No discernible side effects

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@gravity3 I'm about to receive my first rx for the generic of Forteo next week. Was to arrive tomorrow the 14th, but due to a major snow storm, it will be delayed. Thank you all who have commented on your experience with Forteo. Yes, I'm apprehensive about doing the daily injection as well as possible side effects, but at this point have no other choice since my insurance only covers this anabolic drug. 🤞❤🥰

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@mayblin

vkmov, first, no apologies! I'm grateful for your time and effort in providing detailed response and thoughts. I really like to read personal experiences or encounters, and compare them to those described in literature. I've just recently started exploring HRT as an option so I have lots of catchup to do. Coincidently I just got an appointment with my gyn due to a cancelation. Am very eager to hear what she has to say, mainly the risk factors in my case. I also have cardiologist apptmt lined up so I could make some sort of preliminary conclusion before I meet my endo.

Thank you so much for the links, I'll read them all and prepare myself to ask educated questions.

Best of luck to you with forteo therapy!

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Thanks! Good luck with your research. My cardiologist said I would never have a problem with my heart given how healthy it is right now; that being said, the gyn(s) were worried about my stroke risk because other family members had heart disease. So...? Please share your findings as you are comfortable. I, too, appreciate the personal experiences. All the best.

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@applesforall5370

I was put on Forteo for two years for a crushed spine after kypoplasty. I had to Reclast prescribed at Mayo because I had osteoporosis. I worked very well for me. If you live alone get someone to help you.

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Many thanks for your post. I'm very fortunate that I don't need any help...yet! The only time it is challenging is if I have to suddenly take a medication I'm unfamiliar with and one can't always get a friend to spend the night. However, they are willing to check up on me, so that is working thus far. Best wishes.

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@slowsly

There is an online form. The income requirements are listed on the form. For a single person, income must be less than $44,000. That would include income from pensions, social security, and royalities. I don’t remember if spouse support income is included. Be sure you Google Lily Cares Foundation, not just Lily. There are 2 different support sites. The 1st one I looked at would not consider me because I had part D insurance. The Foundation is totally different. Once you fill out the form, your doctor is contacted and has to provide information. Good luck.

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I am not challenging your comment about the income level but I wanted to share that Lily Cares Foundation covered 2 years of Forteo for me with no copay. The time frame was Sept of 2021 through 2023. I applied through the medical clinic where my Endo is. My income is quite a bit higher than the $44,000 you mentioned.

I didn't believe Lilly Cares would help out. The clinic kept calling me to get me to fill out the paperwork. I finally did. It turns out that drugs are listed by Tier, and Forteo is (or was) a high enough tier that one could make more than 4 times $44,000 and still get assistance. All my Forteo was covered 100%.

Perhaps Forteo's Tier number has gone down, but I would contact your clinic and get the paperwork from them and return the application to your clinic.

The Tier numbers I saw were not necessarily the Medicare Tier numbers. These tier numbers were with a chart about prescription payment assistance.

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@lkel

I am not challenging your comment about the income level but I wanted to share that Lily Cares Foundation covered 2 years of Forteo for me with no copay. The time frame was Sept of 2021 through 2023. I applied through the medical clinic where my Endo is. My income is quite a bit higher than the $44,000 you mentioned.

I didn't believe Lilly Cares would help out. The clinic kept calling me to get me to fill out the paperwork. I finally did. It turns out that drugs are listed by Tier, and Forteo is (or was) a high enough tier that one could make more than 4 times $44,000 and still get assistance. All my Forteo was covered 100%.

Perhaps Forteo's Tier number has gone down, but I would contact your clinic and get the paperwork from them and return the application to your clinic.

The Tier numbers I saw were not necessarily the Medicare Tier numbers. These tier numbers were with a chart about prescription payment assistance.

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I hope you are correct, but as of November 2023 that was what was on the online form. That was for a single person income. It was higher if you were married, had kids, etc. I had to submit my 2022 tax form as proof. Maybe they just use the chart as a guide and look at every person individually based on health condition. I appreciate your sharing your info.

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I thought I would share the chart so everyone can see where they fit. I also am attaching the Group 1 list that includes Forteo.

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@slowsly

I thought I would share the chart so everyone can see where they fit. I also am attaching the Group 1 list that includes Forteo.

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At the time, I needed to be making less than 178K for Lilly Cares to cover it all. There are 2 in my household, I believe it also was more expensive when I started it in 2021. It was $11,200 for 28 days. I do believe a key part of the process was having the clinic carry it forward after I filled out the paperwork.

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