In 2006 I was diagnosed with osteoporosis. For the next two years I took Forteo; my spine BMD improved from T -3.1 to T -2.3, and my hip BMD improved from T -2.4 to T -2.1. Several studies have shown that, in the year after stopping Forteo, BMD will continue to improve if bisphosphonates are taken, but will decline if bisphosphonates are not taken. So doctors routinely prescribe bisphosphonates after ending Forteo therapy; that is what my endocrinologist wanted to do, but I declined and did not take bisphosphonates during the past year. Instead, I tried using alternative methods, including daily use of a Juvent vibrating platform, increased unipedal standing, diet modification, increased vitamin D, additional exercise, etc.
I just had my 2009 DEXA. My hip BMD was unchanged at T -2.1, but my spine BMD had declined to T -2.7, back into osteoporosis. Half of the improvement I had made in my spine BMD while on Forteo, is gone. So I am yielding to the advice of my endocrinologist. He currently thinks I/V Boniva is better than Reclast, because in his experience I/V Boniva has substantially fewer side effects. I have had my first I/V Boniva treatment, and will continue with 3-month I/V Boniva for the time being.
So my experimental, non-bisphosphonate effort to maintain spine BMD in the year after ending Forteo has failed. If anyone has been able to maintain spine BMD in the year after ending Forteo without resorting to bisphosphonates, please post your experience in a new discussion topic.
To summarize:
Hip
2006 -2.4
2008 -2.1
2009 -2.1
Spine
2006 -3.2 (before Forteo)
2008 -2.3 (after Forteo)
2009 -2.7
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One Year After Forteo
- By PikaB
- Posted May 21, 2009 at 3:56 pm · 5 replies
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Explore topics in this journal entry and replies:
Exercise Celiac disease Boniva Forteo Fractures Fosamax Reclast Osteopenia Menopause Pain Prozac Osteoporosis Dyspepsia
5 replies
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- By windblown
- Posted May 23, 2009 at 3:15 pm
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Hi Pika, I'm so sorry your scores went back down, but do you think it's possible that they could have been worse if you weren't doing all the things that you are?
I hope you do very well on Boniva, and if you haven't had any side effects yet, you probably won't have any.
Keep us posted on your follow up scores. How often can you have a dxa? Weren't you getting it at the Drs office quite frequently? Well, what I mean is you don't have to wait 2 years like some insurance co's require.
Good luck with the Boniva!!
- By PikaB
- Posted May 25, 2009 at 11:30 am
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windblown:
I think my efforts during the past year were probably responsible for maintaining my hip BMD, so I am continuing with most of those practices (using the Juvent, etc.) But offhand, it doesn't seem that those efforts had more than a minimal effect on my spine BMD. (As with all my speculations, I could be wrong.)
During the second night after the Boniva infusion, I had dyspepsia, which I hadn't had in years. In the clinical trial, 3.6% of the patients had a dyspepsia side effect. On a pain scale of 0 to 10, I'd rate the dyspepsia peak at about a 3. According to the patient information sheet, most side effects are of brief duration (since I/V Boniva only has a half-life of about 2 days, compared to a 10 year half-life for Fosamax). The dyspepsia has been subsiding since then, so I'm hopeful it will be totally gone soon.
When I was first diagnosed with osteoporosis, and started Forteo, my endo had me do a DEXA every 6 months, to monitor my initial progress. But since 2007 he's just ordered one DEXA per year. I still have a few years to go before I'm on Medicare, and confronted with their 2-year restriction on DEXA's.
To my mind, bone change is best visualized by using a "balance scale" metaphor. Every day, for every bone site in the body, things are happening on both sides of the scale. Some of those factors are known, some unknown. Some of those factors are controllable (diet, exercise, medication, etc.), some uncontrollable (genetics, age, chronic medical conditions, etc.). Whether the bone grows stronger or weaker each day depends on which side of the scale is heaviest, so every day we want to pile as much as we can on the Stronger Bone side, and remove as much as we can from the Weaker Bone side. If bones are still getting weaker it doesn't necassarily mean that a medication is not working; it might only mean that there are too many heavy factors on the Weaker Bone side, and a more focused effort should be made to remove stuff from the Weaker Bone side. (The recent discovery that SSRI and PPI medications weaken bones, makes me suspect that there are probably other medications and supplements which will yet be found to weaken bones.)
- By Jeffer
- Posted June 11, 2009 at 9:25 pm
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PikaB,
When you were first diagnosed with Osteoporosis, did your Dr's ever discover a most likely primary cause? Most women, the primary cause is simply post-menopause (big drop in estrogen). For men, it is much murkier - can also be low estrogen, can be low calcium or problems with calcium absorption, low vitamin D, lack of exercise, Celiac disease, etc., etc.
I was just recently diagnosed (spine is -4.1 and hips are osteopenia) and am considering Forteo too (although insurance will be a problem). I am hoping that I can find the most likely cause so that I can address that issue if possible, in addition to taking Forteo to rebuild for a couple of years. In my case, the cause looks like a combination of taking PPI meds for 10 years, combined with vitamin D deficiency - suspect that as the primary culprit. I am trying to get my Dr to test my estrogen levels so that I can rule that out as any possible cause.
My thoughts are that if I take Forteo for a few years, and I address my primary cause (stop taking PPI meds or take different calcium supplements that do not need stomach acid and take vitamin D), then I am hopeful that I can avoid bisphosphonates after the Forteo. If my estrogen level is very low though, like women, I may have to go the bisphosphonate route too since there isn't much they do about that.
Anyway, it's great to hear good results from Forteo on the spine.
- By PikaB
- Posted June 11, 2009 at 11:39 pm
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Jeffer:
My endo made a few standard tests for primary cause, but didn't find anything. From what I have read, I can guess two likely primary contributors to my osteoporosis:
(1) Low body weight. The Male Osteoporosis Risk Estimation Score (MORES) found low male body weight to be the "strongest predictor of osteoporosis" and recommends "DXA testing in all men aged 50 years and older who weigh 70 kg (154 lb) or less". I am on a calorie restricted diet (CR) and my body weight was 145 at the time I was diagnosed with osteoporosis, but I have since let my weight increase to 150. Here's some info on MORES:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2094029
(2) SSRI use. At the time of my diagnosis I had been taking Prozac for several years, and SSRI's have been linked to low BMD and fractures, so I stopped taking it. (I'd rather be depressed than fracture a hip.)
- By Jeffer
- Posted June 12, 2009 at 2:21 pm
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PikaB,
I am low body weight also (I weigh around 145 and I am 5'9"). I had seen that correlation online - thanks for the link. I don't wish to gain any weight even though that would probably help.
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