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.

@slowsly

I just started my 3rd pen. The only side effect has been feeling tired. My part D insurance would have paid some leaving me with about $2,000 to pay for each 28-day pen. I need the Forteo to build my bones so I can have major back surgery. Thank goodness Lily has the Care Foundation and they are providing the medicine for free. My doctor’s office help coordinate everything after I filled out an application on line. My osteoporosis was undiagnosed because no doctor thought to order a bone scan when I should have had one. Please pass the word to anyone you know who is 65 or older to get a bone scan.

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What kind of documentation did Lily Cares require?

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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 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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@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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@vkmov it’s very nice to hear that you are doing great! Wish you a great success with forteo therapy.

Out of curiosity, are you keeping using transdermal HRT as a background during forteo treatment? Could you offer the reason behind the yes/no decision? Thanks a lot!

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@mayblin

@vkmov it’s very nice to hear that you are doing great! Wish you a great success with forteo therapy.

Out of curiosity, are you keeping using transdermal HRT as a background during forteo treatment? Could you offer the reason behind the yes/no decision? Thanks a lot!

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Thank you! Yes, I’m staying on the low dose transdermal HRT (14 mcg) plus 1 Prometrium 3x a week throughout my Forteo treatment. At the end of two years, my doctor said that keeping me on it might mean I can take a lesser dose of whatever osteo drug will help me maintain my bone growth.

By yes/no decision, do you mean the decision to take Forteo or not? I knew I had to take something because I have a 22% risk of a major osteoporotic fracture within the next two years. Forteo was the drug which would help build bone faster. Nevertheless, I was so fearful it took me a while to decide to take it. Oddly enough, it was a consult with an orthopedist that convinced me when he said “I’m not going to tell you to take one of the drugs for osteoporosis or not - I can only say that by the time a patient gets to me, and they’ve had a major fracture and they’ve never taken anything, I can’t help them with surgery because there’s nothing to attach to. The bones are too porous.” At that point I knew I had to do something.

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Correction above: risk of major fracture in ten years not two years

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@vkmov

Thank you! Yes, I’m staying on the low dose transdermal HRT (14 mcg) plus 1 Prometrium 3x a week throughout my Forteo treatment. At the end of two years, my doctor said that keeping me on it might mean I can take a lesser dose of whatever osteo drug will help me maintain my bone growth.

By yes/no decision, do you mean the decision to take Forteo or not? I knew I had to take something because I have a 22% risk of a major osteoporotic fracture within the next two years. Forteo was the drug which would help build bone faster. Nevertheless, I was so fearful it took me a while to decide to take it. Oddly enough, it was a consult with an orthopedist that convinced me when he said “I’m not going to tell you to take one of the drugs for osteoporosis or not - I can only say that by the time a patient gets to me, and they’ve had a major fracture and they’ve never taken anything, I can’t help them with surgery because there’s nothing to attach to. The bones are too porous.” At that point I knew I had to do something.

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Thank you very much for your reply. With your 10 yr frax risk, it's very wise to start forteo.

I'm sorry I wasn't clear about my question. I was curious with the reason behind your continuing transdermal HRT along with forteo. Did your endo give a specific reason for continuing HRT while on forteo?

If you dont mind me asking, how far were you from post menapausal when you started transdermal HRT? Did you use it mainly for the purpose of bone preservation? If so, do you happen to have CTX checked before and after transdermal HRT? What kind of CTx changes do you have if you had the results? I'm considering HRT as an option after my completion of forteo, but from what I read, it's best to be used within 10 years postmenopausal and I just passed that. Also the dose for bone preservation seems a lot higher than the dose you are using.

Best

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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'm so happy this is going well for you. Your plans sound sensible and even going to the MD's office for the first injection makes sense to me. We need to feel confident so whatever it takes. I hope you will check back to keep us posted on how it's going. Continued best wishes to you (and your pup).

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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’m so happy for you that the Forteo treatment is going smoothly! I too was anxious about the injection (even though I am a retired nurse) but it is no big deal for sure. Wishing you good results

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@mayblin

Thank you very much for your reply. With your 10 yr frax risk, it's very wise to start forteo.

I'm sorry I wasn't clear about my question. I was curious with the reason behind your continuing transdermal HRT along with forteo. Did your endo give a specific reason for continuing HRT while on forteo?

If you dont mind me asking, how far were you from post menapausal when you started transdermal HRT? Did you use it mainly for the purpose of bone preservation? If so, do you happen to have CTX checked before and after transdermal HRT? What kind of CTx changes do you have if you had the results? I'm considering HRT as an option after my completion of forteo, but from what I read, it's best to be used within 10 years postmenopausal and I just passed that. Also the dose for bone preservation seems a lot higher than the dose you are using.

Best

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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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