Reclast after forteo-

I am 52 years old, and just completed 2 years of forteo with minimal side affects, although my bone density did not increase. My doctor wants me to have a Reclast Infustion next week. After reading about it, I am afraid. I am healthy, 5'4, 115 pounds, work out, golf, bike. Before Foreo I tried Fosomax but found myself nauseated and unable to drink milk.
I was not given the option of Boniva injections.
Should I cancel the infusion?

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You are 52, and you have many years to improve your bone density. I was diagnosed at 46 with osteoporosis. I am now 62, and have done many types of treatments. All the prescription treatments had side effects. I am now doing strontium citrate, which the only side effect is headaches. No headaches. Taking strontium is the best thing I have done. I take it before I go to bed, at least two hours after eating, to have an empty stomach. It cannot be taken with calcium. Thirty six other countries prescirbe strontium ranelate to treat osteo, (we cannot get it in this country). I am also taking Ultra Bone-Up which seems to have all the bone building nutrients in it. Reclast is a very bad drug and has caused many deaths. If you value your health and life don't take it. Here is an article:


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You are here: Home / Bone Density Drug Dangers / Deaths From Reclast
Deaths From Reclast
November 4, 2010 by Muryal
Filed under Bone Density Drug Dangers
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According to the website EHEALTHME.COM, there were 323 deaths from Reclast, in 2009. It also stated that 66.5% of these deaths were in the age group 60 and over.
On a National Osteoporosis Forum, I recently read the story of one of those deaths from reclast that I felt compelled to share here.
Mike of Lexington, Kentucky, gave me permission to use the following story, which he wrote about his wife, Janet…
Janet’s Story
Janet and I were married on a sunny day in September of 1986. We were both middle aged and it was a first marriage for both of us. Janet was small, standing at four foot eight and always weighing in the 85-95 pound range. Years ago she use to dance at Native American Pow Wows, I still have all of her dance costumes. She could play the piano, the flute and the dulcimer. She could type over 100 words a minute, had beautiful hand writing and was a well organized individual. She could also read and write Hebrew.
I’ve battled maccular degeneration my whole life. This condition caused me to have problems with colors, small print and not be able to get a drivers license. With Janet’s help I achieved much success and retired from upper management in 2005 from the local transit authority. We enjoyed retirement and saw each day as a new adventure. Our music and new home kept us busy.
After 20 years of good health Janet was diagnosed with rheumatoid arthritis and osteoporosis in 2007. Janet was given Reclast in December of that year for the osteoporosis and had no side effects at all. After a rocky start with the RA by 2009 she was back doing almost everything she had done before the RA. Since we hadn’t for a few years, we even talked about taking the Airstream out again this year (2010); yes she could handle that 45 foot rig like a pro.
Her doctor recommended that she take the Reclast again and since she had met her insurance deductible for last year she decided to take her second dose.
One year ago today Janet got ready for her Reclast infusion. She had followed the pre-infusion instructions and drank lots of water. Her appointment was at 10:20am and by noon the fatal dose of Reclast had been administered.
We came home had lunch and then went out shopping. We went to a department store and the grocery. We had supper and the rest of the evening was uneventful. Janet felt fine. She spent the evening on the computer looking for sheet music.
She had her Reclast infusion on October 8, 2009 and 35 days later she was dead. I hope this posting will save lives and if your doctor is really pushing this drug on you please direct him/her to this site to read Janet’s Story.
***************
As Mike stated, I too hope that posting Janet’s Story will help save lives of some and save more from other horrible side-effects of Reclast.
Blessings,
Muryal
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My personal answer would be yes, I'd cancel that infusion. Have you been tested for hyperparathyroidism. If you haven't had an increase with Forteo, I think there must be a secondary cause involved here.

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If I were you, I would cancel the treatment and do a lot of reading and learning and sharing ideas before jumping on that Reclast bandwagon. You can always reschedule. You have a right to tell your doctor you are not comfortable yet, and if you have a good doctor he/she will respect your decision. I would personally not touch Reclast with a ten-foot pole.

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Thanks so much for your long and thoughtful information. It is true, I have time and need to think this through. I canceled my appointment for now. I was glad to find about ehealth. I did not know about that website. I also had not heard of stronium and will check on that. I have had my thyroid checked.

I also wonder about a secondary cause. My vitamin D and calcium levels are always low. They aren't sure why and I take supplements.

Is there some other test I should have? What kind of doctor should I go to? My doctor is an endocrinologist. Thanks so much. Kat

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As I am a Coeliac I always advise to check for this as a secondary disease. Coeliac will cause low Vitamin D & Calcium it will also cause low ferritin (iron storage) levels and as a result of the mix osteoporosis.

Levels will not change even when supplements are taken as the gut cannot absorb the nutrients due to gluten damage. If you have gut issues as well bloating etc ask the endo to check for coeliac it is estimated that the disease affects 1% of the population but 4 out of 5 are not diagnosed.

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Hi KatLovesLife: I've never taken Reclast, but I did take Forteo and had great bmd increases.

You need to find out why your calcium and D are low and resolve that problem since most of the medications would be hindered by this.

Here's a list of medications that cause bone loss:

http://www.nof.org/node/232

And here's another list on medical disorders that cause bone loss:

http://www.nof.org/node/233

Also a list of tests for osteoporosis diagnosis:

http://courses.washington.edu/bonephys/opdiagnosis.html#lab

Some members prefer Dr. Susan Brown's list of tests, but I and many others think Dr. Ott's list from the Univ of WA is more comprehensive, but that decision is up to you. Be sure to read the whole page at the link above.

If you are seeing an Endocrinologist that is a good place to start, but if he/she can't determine your calcium and D deficiencies a Bone and Mineral Metabolism Doc is a good place to go. These doctors specialize in bone and mineral (calcium/D etc) deficiencies and may be able to pin point something an Endo might miss.

Good luck...

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Hi again, I left out a list of exercises and Dr. Browns list of blood tests that are recommended if you want to look at that as well.

I gave you the Univ of WA link (other post) on blood tests for osteo, because I think it covers more. I know when I had blood tests done by my Endo and Bone and Mineral Metabolism doc it included many more than Dr. Browns list (at least 10 more), but her list is good, just not as complete as I would like. The thing with lists is you can always find differing ones, so it's really up to you, the doc and of course your insurance co, since some might not be covered. An example of a test I had that can be very expensive and possibly essential is a: PTHrP test. This test isn't real common, but it is used if you can't find the reason for low/high calcium and D. PTHrP is different than an Intact Parathyroid level test so they are easily confused. PTHrP stands for: Parathyroid Related Protein test. Generally, but not always, this test is done in conjunction with a ACE test, if you are having a problem with hypercalcemia/hypocalemia of unknown origin Hypercalcemia (high blood calcium) and Hypocalcemia (low blood calcium).

Here's Dr. Brown's blood test list for good measure:

http://www.betterbones.com/bonehealth/medicaltestingforosteoporosis.aspx

Here are the exercises from the NOF (National Osteoporosis Foundation):

http://www.nof.org/aboutosteoporosis/prevention/exercise

Of course, the exercise list is not all that you can possibly do, so keep that in mind and check out some others that would be suitable for YOU.

Be sure to discuss the exercises with your Dr., because you may have pre-existing joint/bone or muscle problems that would prevent you from doing some of these.

Also see the "safe movement" link at the bottom of the page on the exercise link above and the "examples" of some of the exercises by clicking on the NOF home page and then "About Osteoporosis."

Good luck and I'm sure you'll get some more input with great ideas - this is just a good place to start or include!

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I wanted to share with all of you wonderful and brave women I went back to the doctor yesterday armed with info and questions. Turns out I have had almost every test mentioned in this discussion except PTHrP test- which she said is only a test that you get if you have cancer. WIndblown Could you speak to that?

She was totally ok with me cancelling the Reclast....

Anyway- the question now is Actonel or a Boniva Infusion. Do any of you have thoughts on that?

Thanks so much

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Hi Kat...yes it's true that a PTHrP test isn't usually done unless you have hypercalcemia or cancer. That's why I said it isn't done very often unless you have a problem with your calcium levels. When your calcium is high, and you've been tested for other causes, they usually think of cancer as a cause. An ACE test also looks for sarcoidosis too and some other things.

The doctor was unable to pinpoint the cause of my hypercalcemia, so this is just one of many tests I had.

You wouldn't have this test unless you fit the criteria above and most wouldn't.

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So should I insist on this test?

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Great to hear KatLovesLife. Sounds like you are on the right track. Reclast is such a dangerous drug, your doctor sounds like she and you made a very wise decision. Hope things will go better for you in the future. Take Care.....

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Hi Kat...All bisphosphonates can lower your calcium levels. It sounds like you didn't take fosamax long enough to cause your calcium to be low, so I'd look at other causes of this and think about it. If you aren't getting enough calcium or D this is one cause, but there are many others too.

I don't think you need to insist on this test, but then I can't tell you what to do. Read the following or any other source of good info on hypocalcemia and see if you have any of these issues.

http://www.chemocare.com/managing/hypocalcemia-low-calcium.asp

How long has your D and calcium been low? If this is something that you've had for a long time, try to find out what's causing it, especially if you are getting enough D and calcium.

Here's another link on hypocalcemia:

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrino logy/hypocalcemia/

BTW, in the first link where it gives you the adult normal value for calcium, that is a ionized calcium test not a "Total Calcium" so don't get these mixed up.

Total calcium measure bound and unbound calcium, and ionized measure's unbound (freely flowing calcium) only.

Sometimes calcium will rise while taking Forteo, but you are saying it's low so I would try to find out why.

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