Boniva

Hello,

My husband has recently been diagnosed with advanced Osteoporosis. Since men are not routinely checked, we are fortunate to even know about his condition.

My primary question is about Boniva. I emailed the Boniva website to see if this drug had been approved for use in men. I had read a couple of reviews on other medications that specifically mentioned their use in men.

Today; I received a response stating that the FDA had not approved Boniva for use in men. From what I have read; I think these bone building drugs all have similar qualities. Because we did not like the side effect warnings of Boniva; we went back and discussed its use with the doctor. Boniva is still his drug of choice.

That was before I checked for its approval in treating men. I don't want to rely on my assumption that this drug was not tested in men because men rarely have Osteoporosis.

I would greatly appreciate any information you could share with regard to your use of Boniva and if you know of any men who take this drug.

My husband is already on calcium and vitamin D3. I am searching for information concerning safe exercise for him.

Thank you.

By jerryd3001
Posted January 25, 2008 at 9:00 am
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Virtually all the osteoporosis medications are first approved by the FDA for women since they make up about 80% of the osteoporosis population. Later studies are done with men, and then the medication gets FDA approval for men, too. The mechanism of action is not gender-specific for medications like the bisphosphonates, Fosamax, Actonel, Boniva, so they are dispensed perfectly legally and responsibly as "off-label." For instance, I was on Fosamax for 2-3 years before it was FDA approved for men.

www.maleosteoporosis.org is a website dedicated to providing information for men with osteoporosis. You will find information there on books that are recommended, and that include exercise details, such as Strong Women, Strong Bones, by Miriam E. Nelson, Ph.D. and Sarah Wernick, Ph.D. You'll find the write up on this by searching on "Meriam" in the FreeFind query block. Also there are some physical therapists that frequent The Osteoporosis Community, so I hope they'll offer some suggestions.

Basically, to be beneficial for the bones, exercise must be weight-bearing. So walking, jogging, weights, etc., would work. Swimming, cycling and similar would not have the desired effect on the bones, although would certainly be helpful for general health normally. You'll see that the experts recommend starting out with light weights and then very gradually building up in repetitions and weight. For quite severe osteoporosis you might not want to start on weights until the medication has rebuilt some bone mineral density, too. So check with your physician and/or physical therapist if in doubt. The number one thing is that a person with osteoporosis does not want to trip or fall, that is when bones fracture for most folks. Of course, with frank osteoporosis, especially spinal compression fractures can occur spontaneously--I know I've had some. But hip, wrist and other sites don't normally fracture unless someone falls or has extremely severe osteoporosis.

I hope this helps. Don't hesitate to ask more questions if needed.

By Nancy3
Posted January 27, 2008 at 4:43 am
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Thank you for your comments. Any and all information is helpful to us right now.

RJ realizes the necessity for the exercise, diet change and supplements and is doing those things now. He also realizes the need for a bone buildiing medication but is having a difficult time agreeing to take Boniva. For those who have side effects, they are severe and debilitating according to patient reviews. He already has esophogus reflux and doesn't want to add more fuel to that fire.

He would like to know from others who have/are taking Boniva what their experience has been. Information from those who have taken other biophosphonate drugs would be appreciated as well.

Would the older medications, with a longer track record, work just as well and with fewer side effects? We would appreciate hearing stories from other patients about their experience with different drugs.

Osteoporosis is not the only issue he is concerned about. His blood work came back with the presence of M Protein, low testosterone, low thyroid, etc. He doesn't want to get the cart before the horse until further tests are done in six weeks. The doctor wanted to see what changes take place over that time period with Boniva, exercise, diet and supplements.

I apologize for the lenght of this post, but the advanced osteoporosis was unexpected and there is concern about the other test results as well.

Thanks to all.

Nancy

By imfishing
Posted February 16, 2008 at 9:17 pm
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Nancy,
I reacted to Fosamx with bad gastritis, then took Actonel for 6 years with occasional erosive gastiritis . After a recent endoscopy I would have been willing to give up on the medication and just do Calcium, D3, Magnesium, and good weight bearing exercise. However the Gastroenterologist said a broken hip was way worse than Gastritis, not mentioning that it could cause cancer. He said just take the PPI and eat whatever I want and I'll be OK. Wow, that did not sit well with me. I went back to my internist and together we agreed that diet, a wedge, and the PPI would help and that I should try Boniva thinking that there would be 3 less exposures to the biophosphenate than if I were taking Actonel.

So I set out to be much more careful about my food (no tomatoes, no citrus, no spices, no soda. ) and to be more care to eat supper earlier allowing more time between food and bed. It seems to have helped! But I've only taken one Boniva so far, so I will report back after the first of March. Oh and by the way I am not taking the PPI except "as needed" and I haven't needed it. Perhaps if I had been more careful about my diet when I was on Actonel , that would have been ok.

I will say I've had some new hip pain this last week. Left hip more than Right but both none the less. I'm wondering if that's a warned side effect. However 2 days before I took the first pill I fell in the gym. I was walking too fast and tripped over the corner of a piece of equipment. Aside from a small bruise I had no pain until this week.- almost 2 weeks since the fall. So I have no idea if the pain in my left hip (the one I fell on) had anything to do with the fall or the pill.
The hip feels better when I'm walking, worse after sitting.

Hope this is helpful information for you, Nancy
imfishing Sue

By Nancy3
Posted February 19, 2008 at 8:45 pm
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imfishing,

Thank you for your comments, however; I am a little confused as to how taking Boniva puts you 3 less exposures to biophosphonates since Boniva is a biophosphonate. Please forgive my not understanding but this is all so new to me and I am trying to keep information straight.

My husband already has GERD and doesn't want to take anything that makes it worse. He will see the doctor at the end of this month and we hope by then to know which medications he is willing to try. Before he considers Boniva he wants to wait for the update from the FDA in six months.

I realize that a lot of the medication warnings provided to patients is more to cover the manufacturer's liability than what actually happens to most patients. However; the biophosphonates are in a whole different group of medications without much of a track record.

Thanks again for your response.

Nancy

By rosaflor
Posted February 19, 2008 at 11:46 pm
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Nancy---I see in posts that gastritis and reflux have been a problem for some of the people who take the oral bisphosphonates. Do you know that there is now a drug in this same class, Reclast, that is given intravenously once a year (thereby avoiding the problems that go with oral administration)? The risks and side effects seem to be about the same whether you have the oral or IV drug. On this board you will find discussion from members who have taken Reclast (I am one of them). I refused Fosamax for about ten years because I feared problems with stomach and esophagus.

By rosaflor
Posted February 19, 2008 at 11:50 pm
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Me again, Nancy. I wanted to respond to your statement that the bisphosphonates are "without much of a track record". Fosamax was approved by the FDA on September 29, 1995, so it's been prescribed for 13 years. The investigational phase of the drug, preceding approval, would add several years to that.

By imfishing
Posted February 28, 2008 at 8:09 pm
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Hi Nancy,
Sorry for not answering all this time. You wanted an explanation about how Boniva might be less irritating to my stomach . I'm hoping per my internist's suggestion that because I'm only swallowing the pill once a month rather than one a week, there will be less irritation. However I must say, it doesn't make sense to me since although I am swallowingi it less frequently, it is a time release medication (I think) so that were still be similar contact. As you can tell, I'm not all that knowledgeable about how Boniva works as opposed to Actonel so this is a trial for me. Tomorrow will be the end of my first month.I have had very little gastritis this month. That is good news. I have been very careful as to what I'm eating. I'm sure that's helped. I have had very bad back pain this last week. Couldn't get out of bed withouth help. Never had such bad back pain- kind of a burning sensation in the lumbar region. . I don't have any idea what caused it. I wonder if I got a compression fracture when I fell almost a month ago. At the time I had know pain I had also one day last week some hip pain in the hip I fell on. But I think if it were the fall it would have showed up long before a month! Yes, I"m on a journey of recovery. I am learning to be very grateful l for the freedom of movement I have at this point..

imfishing-Sue

By MotherGoose
Posted March 1, 2008 at 8:45 am
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Remember that taking Boniva once a month -- although considered by some to be "more convenient", means taking 4X the dose that others are talkin of biphosphonates once a week.
If he has trouble with the Boniva, one of the others -- Fosamax and Actonel - have been around longer with a good track record. Those with GERD are not recommended for the oral biphosonates.
As to your husband's lower testerone levels, this might need to be addressed now, not later. It may have a lot to do with his osteoporosis.
Having the advice of an endocrinologist with a special interest in osteoporosis would be helpful.
By the way -- weight-bearing exercise is NOT lifting weights, but the exercise we get when bearing weight on our feet -- walking, dancing, treadmill, exercising while on our feet, etc/
Resistance exercise is what we get when we use weights and therabands, pushing and pulling to stimulate the bones with the pull of our muscles.
Exercise is site-specific, that is, walking does not strengthen our arm bones (unless we doing Nordic walking) and lifting weights with our arms does not strengthen our leg bones.
Good luck!
Lucy Buckley PT

By RMA
Posted March 20, 2008 at 5:41 pm
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Hi! I am a 53-yr old male diagnosed with osteoporosis this month (March 2008). Supposedly bones look like that of a 80-yr. old :( -

I've gotten opinions from 3 MDs. All suggested Boniva, 500+D Oscal daily, Weight-bearing exercises, and Physical Therapy exercises. I have taken the first Boniva once-a-month pill a few weeks ago and do not have any side-effects yet.

As my condition supposedly evolved over a 5 to 10-yr period, I've been advised not to expect improvements for at least 5 years !

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