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Fosamax Failure
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An_223959 posted:
I started taking Fosamax about 10 years ago. At that time, I had osteoporosis in my spine with a T score -2.5 and osteopenia in my hip. Ten years later I now have a T score of -3.0 in the spine and osteoporosis in my hip with a T score of -3.0. I have had a couple of different doctors and used different Dexas but to go from osteopenia to osteoporosis in my hip which was discovered about three years ago was very unsettling.

I took Fosamax consistently without stopping. I am relatively active. I was somewhat inconsistent with calcium but I recently contacted Merck, the manufacturer of Fosamax, and was told that Fosamax doesn't need calcium to work. The rep took down my information and wants to send a form to my MD. He said that he hadn't heard of a similar thing happening. He asked about the Fosamax's lot number which I certainly didn't keep.

I don't have celiac disease and enough Vit D and calcium in my blood. Now my endocrinologist wants me to go on Forteo. An X-ray taken 3 years ago showed no fractures. Has anyone heard of anyone going from osteopenia to osteoporosis while on Fosamax? It is very upsetting.
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bonebabe responded:
First to clarify about osteopenia/osteoporosis. Your diagnosis is made from your lowest score because you lose bone at differenct rates in different parts of the body. If you have osteoporosis in the spine and osteopenia in the hip, you have osteoporosis. Throw out the osteopenia. Also osteopenia can be -2.4 and osteoporosis -2.5. Not a lot of difference. The numbers in the T-scores are simply an arbitrary line drawn in order to track progress. Having osteopenia and not osteoporosis doesn't make you immune from fractures or make you safe. It would be like saying 180 lbs is obese. Period. Now if you were 6' tall, 180 lbs wouldn't be obese. If you were 5' tall and 179 lbs, by the definition you wouldn't be obese either, but in reality you would be. So, let's deal with your osteoporosis.

The fact that you haven't fractured is the goal of all osteoporosis medications. You've succeeded.

As for bisphosphanates not needing calcium to work, that's just not true. The way the meds work, in simple terms, is to take the calcium you put into your body (the body doesn't make calcium, you have to feed it) and put it in the bones. If you don't have enough calcium in your body already (and you don't if you have osteoporosis) the meds will take it from your already weak bones. So, technically what the Merck rep told you is true, but he neglected to tell you that.

You have to put 1200 mg of calcium in your body every day whether you're on medication or not. That's a fact. You can't get around it. You also need 1000 IU if Vit D in order to increase absorption of the calcium. Your calcium should be taken in split doses as the body doesn't absorb more than 600 mg at a time.

Now with all that said, to answer your question about decreasing bone density while on meds, yes, we have heard of the numbers decreasing but only if the meds weren't taken properly (without calcium/vitamin D) or if there's an underlying medical problem.

Another thing about the calcium in your blood. The blood needs calcium to send it to other parts of the body to do its work there. If there's not enough in the blood, the body takes it from the bones. That's how your bone density gets low. Having enough calcium in your blood doesn't mean you have enough in your bones.

My advice to you is to take your calcium daily. Go to the endo to be checked out. Stay on the Fosamax if the doctor advises. Don't be upset. Your progress is good and should be even better (by the numbers) for your next scan. The really good news is - no fractures.
 
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An_223960 replied to bonebabe's response:
OK--here's my issue. I also went from a T score of -2.5 to -3.0, but this was while taking Actonel (and having just stopped hormone replacement the year before). I decided on Reclast. In one year the T score dropped to -3.2. My diet is excellent as is my calcium intake (and Vit. D). I decided to try Forteo, but could not tolerate it due to numerous side effects. I am considering adding back my hormone replacement in addition to taking Reclast again. Also, I exercise daily--stretching, weights, and walking--totaling nearly an hour. I don't understand why my osteporosis has not improved.
 
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bonebabe replied to An_223960's response:
Having a bone density test one year after starting treatment isn't going to give you as accurate picture of your bones as it would if you waited another year. The bones are very slow to respond to treatment. That's why the recommendation is every two years unless you're on prednisone or some other high risk med.

Two, the T-score isn't the whole story. Gain and/or Loss are calculated using BMD, not T-score.

Have all your tests been done at the same place, preferably by the same tech/nurse? You would be floored to see what some of the tests look like that we get when patients bring their previous ones from other facilities. Even the slightest variation is position can make a huge difference in the resulting numbers. If the test is repeated on the same machine, we can superimpose the current image over the last one and accurately calculate changes. You can't do that going from place to place.

And lastly, if none of the above apply to you, has your doctor evaluated you for some underlying cause of your osteoporosis? Many times osteoporosis is secondary to something else going on.

Again I should emphasize that improvement isn't necessarily measured in T-scores or BMD. The goal is to reduce fractures or fracture risks. You can still fracture with a T-score of -1.5. A number doesn't guarantee no breaks. If you go test to test without "improvement" but do not have a significant loss (according to the lowest significant change) you're considered stable and that's good.
 
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jenmik responded:
Yes I too took FOSAMEX for ten years I started out with Ostepenia now have Osteoporosis. Obviously an absorption problem. Considering the twice a year shot.
 
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bonebabe responded:
You didn't have osteopenia. You had osteoporosis. Period. Diagnosis is made by the lowest score - not individual site scores.

Also change isn't measured by T-score, but by BMD according to a specific formula. Oftentimes, the T-score may be lower, but in actuality there is no change and that is considered stable.

The fact that you've had testing done at different places, plays a HUGE part in your results.

As far as that Fosamax rep is concerned, he is 100% wrong. All these osteo meds need calcium to work. To take a med without taking calcium would be like hiring a bricklayer and not giving him any bricks to work with.

If you have not had any fractures, then the Fosamax was doing its job. It is approved for the prevention and treatment of osteoporosis to reduce fracture risks. Sounds like it did. You are fortunate.

Does your doctor want you to go on the Forteo solely because of your T-score? You don't say how old you are or how much you weigh. That would figure into it to. What was your maximum height and what is it now? Have you ever been treated with corticosteroids for longer than 6 weeks? Did your mother/father/sibling have osteoporosis, break a hip or lose more than 1.5" of height? All these things would play into Forteo use. Forteo is a good drug and will build new bone. Then you would go on a bisphosphonate to strengthen that new bone. But you will need calcium - 1200 mg/day along with at least 1000 IU of Vit D. Your body will not absorb more than 600 mg of calcium at one time, so spread it out.

I'd love to have the Merck rep's name to follow up on his claim, if you'd be willing to share it.
 
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bonebabe replied to jenmik's response:
Oops, looks like my page didn't load properly and I re-answered the initial post.

The Osteo drugs do not guarantee improving your T-score. That's not their purpose. The purpose is to reduce your risk of fracture. To say that you went from osteopenia to Osteoporosis is not enough information. Osteopenia can be as low as -2.4, whereas osteoporosis starts at -2.5, according to T-score only. If you've ever had a non-traumatic fracture, no matter your T-score, you have osteoporosis.

You may or may not have an absorption problem. Were you taking the Fosamax on an empty stomach with a full glass of water and staying upright for at least a half hour?

Also were you taking 1200 mg of calcium daily? If not, the Fosamax won't have anything to use to strengthen your bones.

The Prolia is a tricky med. It's to be used only as a last choice when all other meds have been tried. It's not one of the front line choices. Go on the NOF website for a lot of information about osteo meds. www.nof.org That's the gold mine of all things osteo.


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