Forteo Failure

I was on Forteo for the full two years and the bone density in my spine did not improve at all. The bone density in my hip improved slightly. Has anyone had a similar experience?

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I a m just short of two years and hope my results are good. Please keep us posted on what your doctor wants to do now.

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Did you experience any negative side effects from the forteo?
Is it possible that the negative side effects were counterproductive? I'm very sorry to hear you had little gains.

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Sorry to hear of your lack of improvement. My T score in my spine is -3.5 and I am starting forteo but with rservations

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Maria,

What is your age, and do you know what it was that caused your OP? The cause is important, and might shed some light on the lack of improvement on Forteo - (I think).

Tom

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Tom,
What does age have to do with it? I ask because I am 35 with -3.5 in my spine. I am suppoze to start forteo in Feburary. With MUCH reservation. Any insight would be appreciated.

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I did not have any negative side effects from the Forteo, except possibly some aches in my shins when I first started on the drug. The difficulties in traveling bothered me more and the bruising from the daily injections. From reading various posts, it appears that most women who go on Forteo do increase their bone density. I am just curious if anyone else had an experience similar to mine.

Last week, I met with an MD expert in Osteoporosis for a second opinion and she pointed out that I didn't fracture while I was on it, although she wasn't sure that she would have recommended it for me in the first place. She has ordered some lab tests for me.

She strongly recommended exercise and a positive attitude.

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i was put on forteo. i started getting negative side effects after the first
injection. Nausea, headaches, muscle pains, and flu like symptoms. after the third day of it
i quit as i couldn't even get out of bed.
it didn't work for me.

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Hi. My name is Vickie. I had Osteopenia a little over two years ago. My doctor prescribed Fosomax right away. Thankfully, I had a severe allergic reaction when I took one Fosomax pill. I did not notify my doctor because I knew she would just give me a re-formulated version of the same type of drug as Fosomax. Right away, I found out how bad these kind of drugs are for you, and that they usually do not increase bone density, but make bones stiff and brittle. My sister was on Boniva for years, and because of this fact, her doctor took her off of Boniva and wanted her to do it naturally. Of course, I gave her many helpful facts that I had learned that would help her, and referred her to this website as well.

Happily, I found out that by eating the right things and by doing weight-bearing exercises, I could increase my bone density naturally. I found a website I would highly recommend at: www.saveourbones.com. Using this Website's recommendations on eating and supplements(not complicated) along with doing weight-bearing exercises (walking is what I do for this), I increased my bone density significantly per my doctor. It's so funny because my Doctor thought it was because of the medication I was taking. But I told her I did it naturally.

When you get on this site's email list, you can ask any questions that will be answered for free. Plus you get continual helpful emails that inform you about what is good and bad for our bones, etc.

I hope this information is useful to you.

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After numerous fractures I have been on Forteo 1 year Feb 1st 2011 first 3 months using it was way to painful so I dropped down to every other day and that seems to work for me. I have not had a fracture since Dec. 2010 but I also take D3 6000 iu daily, magnesium 250 a day and MK7 45msg daily along with the fish oil, and a multivitamin every other day. Plus concentration on diet and exercise, swimming, walking. 3 months after taking forteo I had bone scan which showed slight improvement but wonder if that wasn't from my previous regime of minerals, vitamins, diet, exercise? Endo did blood test also and it showed some kind of what he called blood makers that showed him something was working. See him first of March hopefully everything is as it should be.

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Missie2,

I ask about age because like you, younger women could have secondary OP, caused by many things other than hormones. To know the cause is to be able to treat the cause. If it's malabsorption like celiac disease, it's important to correct the cause asap.

Tom

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I am postmenopausal and had an early menopause so the cause of my OP is likely to be lack of estrogen. Also, I have been screened for secondary causes. I have all the risk factors, small, slim, scoliosis , etc. But I have not had a fracture although I have severe OP in the spine and osteopenia in the hip.

I wanted to share my experience that after two years with Forteo not everyone improves their bone density. My MD raised my expectations by stating that everyone improves with Forteo. He exaggerated the benefits and rejected any possible risks by stating there were none. This is not uncommon among the medical establishment and drug manufacturers.

I saw an expert in OP last week for a second opinion. She wasn't sure she would have prescribed Forteo for me in the first place. She ordered some lab tests. She likes to wait on the Forteo until you really need it. She was impressed with my physical condition after examining me.

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I am also disappointed in my results ...
After 11 months on Forteo I had a dexa in January 2013 showing improvement in hips but some more ... loss in spine!
In November 2012 I had a " worsening of a previous fracture" in my thoracic spine and saw my endo last week. I am still in pain from my fractures .
The plan now is .... Take Forteo until 18 months are completed then an infusion of Alcasta ( Reclast)
I have had the 3 once a year infusions before Forteo .. (With only minimal side effects. ) But had a non contact fractured sternum about 18 months into this course.
I am on prednisolone since 2006 , for polymyalgia rheumatica .. Steroid induced ? and / plus a family history of osteoporosis. Also have osteoarthritis in most joints.
I placed a lot of faith in Forteo and I am grateful to have hips down graded to osteopenia.

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PinkPolly,

Did the Reclast improve your T-scores any? If not, it seems darned dangerous to take it again, what with the extremely long half-life, in case there are worse side effects next time. Sorry to hear about those painful fractures. Here's hoping you heal okay and have less pain. Are you able to do any type of exercise yet?

Tom

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I started on Forteo May 2011 so coming up on 2 years. I had a scan May 2012 and my T scores did inprove.
Hip from -4.9 to -4.1
back from -4.9 to -3.9.
Previous to being diagnosed and taking Forteo I fractured my rt hip, then rt femur, pelvis and 4 fractures in my back.
I did and still do have side effects but I tolerate them. The worst side effect was nausea 24/7 in the beginning. I occassionally have nausea each day but not for long. I do have a lot of leg pain though. They have given me "drug holidays" and my legs felt better. I won't do the drug holday longer than a week anymore because of the nausea. I do give myself 1 or 2 days a week where I do not take it. The doctor wants to take me off of this now, because of the leg pain, but I will tolerate it until May because I am undecided what to do next.

Good luck to you

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Hi Tom, you are right my T scores did not improve on Reclast. I will ask why I would expect it to now ? Maybe after Forteo it might work ?

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Missie,
I was 40 when I started taking Forteo. I finished my two years in December. I had great improvement and NO side effects. My beginning spine level was similar to yours (-3.5) and now my spine is in the normal range at 1.6 (my best score)! I am so glad I took Forteo, and I hope you have good results too!

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Thanks for your hopeful reply. I will be starting next week.

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How much Prednisone are you taking ?

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SoCalmaria: I too have had no increase in bone density with Forteo after a year and a half. I've been seeing a specialist for high calcium. She immediately took me off the Forteo saying the Forteo only made my bones worse. I am now going to be referred to a surgeon by the specialist since there is a possibility I have hyperparathyroidism. I recently had an ultrasound of the thyroid and nothing can be determined from that test. The surgeon will probably have a test of his own for me. I've been told hyperparathyroidism is the cause of osteoporosis. Hope this information helps you too. I've already had 3 fractures. None in the hip.

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April12,
Thank you for the encouragement. It's wonderful that you experienced such tremendous gains from taking forteo. I hope you keep all that you gained. Can I ask, do you know what caused you to develop osteoporosis at such a young age?

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