I want my bones back!

March 14, 2007 2:46 PM

Something bad has happened with my bones, now what?

I have been on Depo Provera a couple months shy of a decade. I have been a little Depo missionary, I thought it was amazing. I loved not having a period for a decade, it was freeing and I had no noticible side effects.

Warnings started to come out, but my doctors said that as long as I ate enough calcium I would be fine, for good measure throw in some exercise. I eat more dairy than anyone I know, I love it. I am pretty active too.

The more I read the scarier it sounded so I asked my doctor for a DEXA scan. Everyone acted like I was crazy. I was 27! Why would I want a bone density scan?!

My doctor fudged some things to get the test covered by insurance and there is was" Lumbar Spine t. score -1.4 Fracture Risk: 3x 0s" Osteopenia is clinical bone loss it is defined a -1 to -2.5 with Osteoporosis being -2.5 or less. So I am well into clinical bone loss. I am sad and irritated and mad and scared.

The question is what do I do now? I think the protocol on this needs to be changed so young women will monitor themselves better and they will know what their real risk is. I have seen some lit. around that weight bearing exercise doesn't affect the density of the lumbar spine.

What exercises, what diet, what class action, what new shows, how do I right this for me and for other women on this drug?

posted by stormygrey to Health & Fitness (28 answers total)

So sorry to hear about your terrible discovery.

IANAL but that is exactly what you need. Google is your friend.

In the mean time, tell your friends to get off the drug, at the very least. Start searching around for support groups for Osteo / bone-loss issues, that's where you'll find people sympathetic to your cause (read: potential class-action members).

I wish I could be of more specific help but hopefully someone else in the hive can be. In the meantime, remember, someone somewhere first had this thought about Vioxx at one point...and they stuck with it. Stick with it.
posted by allkindsoftime at 3:33 PM on March 14, 2007

If you are a young, healthy pre-menopausal woman (<4 0) i think that your doctor should at least investigate some other possible causes for low bone density before blaming the depo. to help you google, a href="http://www.google.com/search?hl=en&q=osteopenia&btnG=Search">Osteopenia, is the clinical term.

Hyperparathyroidism, for example, is very common in the US and many patients have no idea that they are suffering.

Maybe you should ask your doctor if a routine laboratory workup (Calcium levels, Vitamin D levels, and parathyroid hormone levels - all routine inexpensive tests) and an endocrinology consult would be warranted?
posted by i_am_a_Jedi at 3:51 PM on March 14, 2007

Response by poster: I just had all that routine lab stuff done and doc said it was "immaculate" I will have to see if that included all the stuff jedi just mentioned.
posted by stormygrey at 4:09 PM on March 14, 2007

It's not just normal exercise, it's weight-bearing exercise that's better for slowing bone loss, iirc. And they make delicious chocolate calcium suppliments - but you also need Vit D with the calcium.

You *are* going to at least consider stopping the Depo, too, right? The longer one's on it, the worse it seems to be (preliminary investigations only, etc, but I was just googling this not an hour ago because I've got a round of Provera coming up.)
posted by cobaltnine at 4:13 PM on March 14, 2007

Response by poster: I quit before my last shot was due and got on the ring a month or so ago. There is no way I would take something that is shown to possibly delay calcium absorption now that i have an old lady back.

I take viactiv, it has D and K as well. I eat well.
posted by stormygrey at 4:18 PM on March 14, 2007

My html ability is failing.

Osteopenia is what I meant.
posted by i_am_a_Jedi at 4:19 PM on March 14, 2007

I, too, have osteopenia at a young age, although mine stems from different causes. (I was anorexic as a teenager, and I've been on high-dose steroids for autoimmune stuff. I don't know which of those things caused my thin bones, and I'm not going to waste emotional energy worrying about it.) My basic feeling about this is that there's not much I can do about it right now, so my best bet is to maintain a healthy lifestyle and not freak out about it too much. My doctor has told me to eat well, get plenty of exercise, not smoke, and get a bone scan every two years. There are some drugs that prevent bone loss, but she said that none of them have been tested on pre-menopausal women, so they'd only resort to that with young women in really dire cases. And neither you nor I count as a dire case.

A class action suit seems like a long shot (although what do I know), but I do think that we should work on awareness of bone health and access to bone scans for younger women who are at risk. I also think doctors may need to be educated to take this seriously. I don't know how to go about doing those things, though. Possibly, we need an annual 5-K run and cute colorful ribbons.

Personally, I've found my bone issues kind of liberating, because it provides me with an impetus to think about food and exercise that doesn't have anything to do with how I look or whether I'm thin enough. But maybe you're saner than me and don't need that push towards thinking about health rather than aesthetics.
posted by craichead at 5:45 PM on March 14, 2007 [2 favorites]

Response by poster: Thank you craichead, I haven't had a chance to speak with my doctor except briefly on the phone when she said "those people should get in real trouble". There is already a class action lawsuit in Cananda, a big one. I don't really know if that's the answer anyhow, its more about making sure proper protocols are out there. I am sure phizer makes some whiz bang drugs that help lots and lots of people, so I really don't know how to make a difference.
posted by stormygrey at 5:55 PM on March 14, 2007

I'm actually in my 2nd month on Depo Provera, and being only 22, my GP (I'm from the UK) was very reluctant to take this route, and we only came to this decision once we realised I couldn't take the Pill (severe migraine history) and it wouldn't be long term use.

Basically, she made it clear to me that because of exactly what has happened to you (and god, I am so sad to read your post), she would not let me have the injection for more than a year. I'm just too young to be taking it long term (she seemed to imply it was better for the over thirties). So the information is out there with good doctors, and I hope that's some kind of comfort for you.

If I were you, I would start an independent website to explain the effects of long term use, and make sure it's somewhat visible on Google et al. I hate the results that come up when I search for medication/contraceptive information, nothing seems to reflect personal use of a drug, just company/scientific garbage that doesn't feel genuine. I would definitely talk to a lawyer about any kind of legal action you could take against the company.

I'm just glad I have a good doctor that was cautious about my use of this form of contraception. Best of luck to you.
posted by saturnine at 6:09 PM on March 14, 2007

Before you panic any more, go get another Dexa scan. I've had two so far. The first one showed a hip T-score of -1.2, and the second test showed a hip T-score of +.2. I don't know why the results were so different, and which one is correct, but you can see that it's entirely possible for this test to be very wrong.

I also agree with Jedi that you shouldn't assume that the Depo is the only possible cause of bone density loss. Maybe it is, but you need to make sure that there isn't something else wrong with you. I have hyperparathyroidism, and I'm only 28.

You should get a test for PTH (parathyroid hormone), which isn't included in "routine" labs. And even if you had normal calcium levels, you can still have abnormal PTH - there is usually correlation, but not always. See an endocrinologist if your regular doctor doesn't want to do this test.
posted by clarissajoy at 6:19 PM on March 14, 2007

Best answer: how do I right this for me and for other women on this drug

There's a section in JANE magazine called "It Happened To Me," where you can share yr story and educate other women. Here's the submission information.

You can also pitch a story to other like-minded pubs with the same demographic, like Venus.
posted by pfafflin at 7:00 PM on March 14, 2007

I would also ask your physician for a referral to a rheumatologist. Osteporosis/Osteopenia is their specialty.
posted by 6:1 at 7:51 PM on March 14, 2007

I know that people recovering from hyperparathyroidism after successful interventions will gradually regain normal bone composiiton. It may take a few years, but I think you can be optimistic about your future prospects.

Note: even normal but high calcium levels in the face of an upper range PTH score indicates a problem with the parathyroids.

Not that I doubt Depo's ability to mess with your endocrine system.
posted by macinchik at 8:43 PM on March 14, 2007

Best answer: see the rheumatologist. there are pills out there, boniva, etc, that your doctor can prescribe to improve your bone density.

chow down on calcium supplements and lots of vitamin D (which binds the calcium to your bones). you don't have to overdose, but ask your doctor how much you can safely take. my doctor said taking 200% the rda was perfectly safe (i am allergic to dairy, and needed to supplement my calcium intake). but that's my doctor, and my body, so please check with yours.

finally, strengthen your muscles. strong muscles, ligaments, and tendons can help support weak bones. see if you can get a referral to a physical therapist who can help you come up with a plan.
posted by thinkingwoman at 8:52 PM on March 14, 2007

I would also ask your physician for a referral to a rheumatologist. Osteporosis/Osteopenia is their specialty.

I think you may be better off with an endocrinologist.
posted by docpops at 9:05 PM on March 14, 2007

And remember that Boniva/Fosamax, etc. have their own share of potential problems.
posted by docpops at 9:08 PM on March 14, 2007

I only mention this because of the coincidence of my having read this report a couple of days ago while reading the Wikipedia article on Xylitol: Dietary xylitol in the prevention of experimental osteoporosis

The Wikipedia article also mentions another study on rats: Improved bone biomechanical properties in xylitol-fed aged rats.
posted by xiojason at 9:39 PM on March 14, 2007 [1 favorite]

Best answer: I was 30 when I was saddled with the news that I had what the MDs call "pre-menopausal osteoporosis," and I echo much of the advice given here.

You'll want to plan for yearly or bi-annual bone scans (since you have a diagnosis on the record insurance should pay for it), and look around not only for an endocrinologist, but one who has experience treating us pre-menopausal types. Most endocrinologists simply don't see young women with bone problems and have no idea what might have gone awry, what still might be awry, and what the hell to do with us.

While Depo-Provera may be a culprit, the specialist who I saw reccommended staying on some form of birth control (the regular 28-pill pack kind) because it's a surefire way to make sure you are getting enough estrogen in your system.

As many have mentioned, be aware of other risk factors for thin bones- my problems may have started with late menopause and some trouble with eating, but high doses of anti-depressants (specifically Lamictal, also perscribed as an anti-seizure medication- apparently many of the anti-seizure meds cause bone loss) did not help matters, and at this point you don't want to take anything to make things worse. Research every med anyone tries to put you on to make sure that it won't possibly compound things, especially for conditions where a range of drugs are available (i.e. depression).

And as many have mention, blitz on the supplements. And get yourself a perscription for physical therapy so you can develop a regime of weight-bearing excercise to fight the good fight.
posted by foxy_hedgehog at 9:41 PM on March 14, 2007

Others have said this above, but online forums and print magazines for women would be a good way to start getting the word out. Eg Bust magazine has active forums, Oprah, Oxygen, etc. Think small and indie, and think big and widereaching.
Also, according to my cursory Google, in 2004 the FDA started putting a warning label on Depo, warning of bone loss and saying that you shouldn't be on it for more than 2 years? Have you seen that warning label? Is it the same doctor who's been prescribing it to you all this time?
posted by LobsterMitten at 11:00 PM on March 14, 2007

Also try major feminist bloggers - Bitch PhD, Pandagon, Shakespeare's Sister, et al. You could ask them to just post a few sentences on their front page and reach a lot of potentially-affected women that way. (Including teachers, profs, editors, policymakers, others who have the connections to get the word out.)
posted by LobsterMitten at 11:01 PM on March 14, 2007

Response by poster: LobsterMitten, I brought up the warning with all my doctors (several college clinics through undergrad and grad, planned parenthood, etc.) and they said the warnings were overblown and I would only have a problem if I ate like shit. I have taken the fiber/calcium tablets and the viactiv on and off forever, plus I love dairy, so in the last year or so that I tracked I was getting 1500-2000mg a day most of the time.
posted by stormygrey at 5:05 AM on March 15, 2007

I don't agree that you should take it upon yourself to try and diseminate the news that depo-provera can sometimes reduce bone mineral density. It is not a big-pharma crazy conspiratorial secret. Here's a recent Cochrane Review on the subject. At present no-one can say for sure if the changes you have experienced will have any health consequences; the density will probably normalise with a regular diet alone, as your oestrogen kicks back in. Although you yourself should follow up with future bone scans, that isn't a zero-risk investigation in itself, and not all women currently on depo-provera should necessarily be screened with it.
posted by roofus at 5:57 AM on March 15, 2007

Response by poster: Roofus, why shouldn't they be scanned? Its an Xray basically, its rather inexpensive and since bone loss doesn't hurt, there is no other way you could detect it.

Your understanding of bone density is a little off. You build to "peak bone density" from about 17-30. So, someone in my position has perhaps 3 years to make up the last decade. What they are unsure about is if you can even start to make it up.

We can for sure say I have health consequences, because right now I do have health consequences. I am at a 3x times greater fracture risk, that is a health consequence.
posted by stormygrey at 6:11 AM on March 15, 2007

It's extremely complicated trying to decide whether or not to recommend any kind of screening. We do have a defined population here, who might potentially benefit from screening, but the screening process itself might cause harm. There are small but measurable carcinogenic and future genetic effects associated with any test involving ionizing radiation. I have no experience of measuring bone density using ultrasound, but even in that case, there could be ill effects from diagnosing and over-treating clinically insignificant lesions discovered.
It would need a very longterm RCT to decide for sure if it is worth recommending women on depo-provera to be screened. Until it is first proven that depo-provera is associated with an increased rate of fractures, it isn't worth considering at all.
Although your risk of fracturing your hip is currently x3 greater than the average 27 year old woman, I have never heard of an average 27 year old who fractured their hip, except in some kind of major trauma. Additionally you do not know for sure that this increased, but low, risk of hip fracture is actually a consequence of the depo-provera.
posted by roofus at 8:33 AM on March 15, 2007

My mother has rheumatoid arthritis and takes medication that causes bone loss. I e-mailed this to her and she replied with:

I read the post and replies and I don't have much to add to that. I take 1200mg+ calcium supplements, do weight-bearing exercise, and I take Fosamax. My bone density is still in the normal range even though I've been on prednisone for almost 10 years. Prednisone is the biggest bone destroyer there is, but it sounds like her birth control is a problem as well. I've been on and off Fosamax or another similar drug for several years and I have developed side effects from it, such as a swallowing problem. Many times with medications you have to decide if the benefits are more helpful than the side effects are harmful. There are some concerns about Fosamax and other similar drugs because of jaw problems – but my doctor told me the chances of having a broken bone is far greater. So – I’m taking it for now but since I’m having swallowing issues my future with it is iffy.

Advice to the woman on metafilter --- see a rheumatologist. They are the docs who treat what she has. I’d skip the class action suit until later – she needs to get her health back on track. There are drugs which re-build bone and not just prevent bone loss and she should check into these ASAP. She should also use Google a lot.
posted by ztdavis at 10:46 AM on March 15, 2007

I had been on Depo for five years when the studies about bone density loss came out. They suddenly decided that you shouldn't be on Depo more than two years. The place I went to for the bone density scan almost refused to take me, I was 24 at the time and they'd never had anybody under 25. When the results came out, they realized they didn't actually know if I was normal or not - because the standards are all for people at age 30 and above.

I do seem to remember a class action suit taking place with regard to this. I had the opportunity to sign up, but I have a very bad habit of procrastinating and I may have missed the opportunity.

I believe there is a suit still pending in Canada, which you can sign up for here. Those lawyers might also know more about whether the class is still open in the U.S. suit.
posted by etoile at 11:47 AM on March 15, 2007

An additional note for saturnine - has your physician considered NuvaRing? It doesn't have nearly as many negative side effects as Depo, and it may work for you since the Pill won't.
posted by etoile at 11:51 AM on March 15, 2007 [1 favorite]

Nutritionists disagree on the calcium absorption issue, so eat dairy and other nutritional calcium if you enjoy it. Don't drink sodas with phosphoric acid, like Coke.

Start a website about your experience, and you may find and help others who have been similarly affected.
posted by theora55 at 2:47 PM on March 15, 2007