My DH has recently been diagnosed. We don't even have aspirin in our house on a regular basis, and generally look for holistic solutions, so these bisphosphonates are really scaring us. "The" pre-eminent bone specialist in our area started by pushing the once-yearly IV. When DH freaked out about that, the second offer was for daily injectable. The third offer was for monthly Actonel at 150 mg. DH took that prescription home, but we continue to do research. The Actonel guidelines recommend weekly 35 mg for men, and the lowest dose is 5 mg. daily.
DH is planning to go back to the MD and request a change in the prescription to the 5 mg daily dose, so if he reacts badly he can quit faster with less of the drug built up in his system.
This MD clearly doesn't have knowledge of the other research being done on Vit D, Strontium, Boron, and so on, and had very little to offer re nutrition and exercise. Thankfully, we have a PCP who is much more knowledgeable on those matters.
DH would like to try the nutrition/supplements/exercise route before resorting to the drug, but has concerns that his disability insurance company would view this as non-compliant, and jeopardize his benefits. (He has a very physical job requiring lots of heavy lifting and spine-twisting, and the "expert" MD has banned all lifting over 10 lbs and any spine-twisting or other risky activities, which pretty much takes him out of work.)
Sooo, does anybody have any thoughts on this compromise idea of lower daily dosage to see how it goes?
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Bisphosphonates - to take or not to take?
- By Mayaluga
- Posted November 1, 2009 at 4:23 am · 8 replies
- In Osteoporosis medications
- Shared with the public
Explore topics in this discussion:
Exercise Celiac disease Crohn's disease Aspirin Fractures Fosamax Actonel Menopause Osteoporosis Cortisol Stress
8 replies
- Oldest first
- Newest first
- By millie123
- Posted November 1, 2009 at 5:30 am
- Report post
What kind of scores does he have and did the doc do all necessary tests for secondary causes? He's probably right about the lifting and twisting, by the way.
- By Mayaluga
- Posted November 1, 2009 at 5:50 am
- Report post
Both T-scores on the DEXA were -2.5, and he has had two fractures since 2007 (age 57). One fracture was the sternum, and did not occur due to severe trauma like being administered CPR or being hit in the chest with a softball. He was trying to squeeze out of a small space, and the pressure caused the fracture.
He's had a lot of lab tests done, and seems very healthy otherwise. This DX has actually been quite a shock, because he is so healthy otherwise. His BP at age 60, for example, almost never goes above 120/80, and is often better.
His PCP has tested for VitD, Testosterone, Calcium, etc. Whatever he thought might be a factor in the BMD problem.
He is being very compliant with the lifting/twisting restrictions.
- By blackgorilla
- Posted November 1, 2009 at 8:26 am
- Report post
And what were the results of the Vit D, testosterone especially and calcium? Men do have an advantage with their testosterone, I believe. If I could get a low dose patch of testosterone, I'd use it because I think it would help me build muscle.
And, he does heavy lifting which should really help. Weight resistance is one of the best exercises.
Ten years ago, when I was first diagnosed with osteo, my counts were -2.51 in both lumbar and hip. I began taking Fosamax because that was the "wonder drug" at the time and the only one at that. Two years later my counts had dropped to the -1.7 range and stayed there for 8 years.
This last dexa scan showed I had gained 4.4% in my lumbar area and lost 6.7% in my hip measurement. I was taking the Fosamax generic for these last two years. However, I am now off it because they have no tests showing it still helps after 10 years. In fact, it may make the situation worse.
I have increased my walking (frontwards, backwards and side to side) to try and offset my hip measurement. I get my calcium from nonfat milk with a bit of lowfat chocolate milk mixed in. My Vitamin D is great at 74. My husband and I plan to test our Vitamin D in another 3 months. His count was low at 48. So we increased his dosage and I decreased mine and then we'll see what our scores are. That will give us an idea of how to proceed.
Keep us informed of how your husband is doing, please.
- By jacquelinenh
- Posted November 1, 2009 at 9:56 am
- Report post
If he is already the type of person who turns towards holistic remedies, there's lot out there, as others have pointed out. Here's a PDF from Better Bones that goes into great detail about deciding whether or not to take a bisphosphonate...
"Do you really need a drug for your bones?"
www.betterbones.com/osteoporosis/osteoporosistreatment.pdf
- By Mayaluga
- Posted November 1, 2009 at 11:10 am
- Report post
I think you misunderstood a little bit. DH's job requires the ability to lift various weights, but since he fractured a vertebrae in 2007, and then his sternum in 2008, he got around that requirement - and the twisting/bending stuff - because he was supervising young, strong men, and they stepped up to help him out. His MD has FORBIDDEN lifting >10 lbs for the next six months, as well as any task requiring twisting or stress of the spine, while he undergoes P.T.
His VitD was 34, and a second test put it at 39. He's on 10,000 iu a day just now. I don't remember the testosterone level, but it was low, also. He's taking Saw Palmetto for that at the moment, and will probably switch that up, maybe Stinging Nettle or other. I also don't recall the calcium, but he's on 1,000 mg daily, divided into two doses, which we understand is the max the body can absorb effectively.
- By Mayaluga
- Posted November 1, 2009 at 11:20 am
- Report post
jacquelinenh - thanks for the link! We're really moving on research just now. The dilemma really boils down to this:
"The" expert who was able to assess the risk of DH going back to work lifting and twisting and bending seems almost exclusively pharmacologically based. When we inquired about nutrition, supplements, and P.T., little was offered. This expert was clearly not up-to-speed on the literature on VitD, Boron, Strontium. Even the type of calcium recommended was out-of-date.
Meanwhile, our PCP has great concerns about the bisphosphonates (as does our dentist), and has offered a broad program including supplements and P.T.
DH would like to try the PCP's program, without the drug, first, but are worried that, if he doesn't take the drug and the disability insurer finds out, he will be ruled ineligible because he's not complying with that.
That's why he's considering asking the bone expert to revise the prescription to the 5mg daily dose from the 150mg monthly. If he reacts badly to the smaller dose, at least the damage will be less.
- By SequoiaHealth
- Posted November 4, 2009 at 4:36 pm
- Report post
Hi Mayaluga:
The medications will not work properly unless you first have the lifestyle components just right. The lifestyle changes are going to make the biggest long term difference.
I recommend 5 important lifestyle changes for my clients and support group members who have been diagnosed with osteoporosis/osteopenia.
These are:
1. A diet that contains 50% fruits and vegetables. Fruits and veggies contain greater amounts of water and minerals with generally lesser amounts of
animal protein.
2. Adequate water intake for maximum hydration. Water is very important in helping the kidneys regulate pH and detoxify the body.
3. Daily stress reduction activities. This helps lower cortisol and homocysteine levels reducing calcium loss.
4. Year round vitamin D3 levels in the 50-80 ng/mL (or 125-200 nM/L).
This should be confirmed by 25-hydroxyvitamin D testing.
5. Sufficient weight bearing exercise to stimulate balance and muscle growth which is essential for bone strengthening determined
I also suggest Dr. Cannell’s site and recommendations for vitamin D that are top notch www.vitamindcouncil.org.
Dr. Lee’s book What Your Doctor May Not Tell You About Menopause http://www.johnleemd.com and
Dr. Holick has a great website and book called The UV Advantage. Worth a look http://www.uvadvantage.org
Gillian Sanson has a great book called The Myth of Osteoporosis. She presents some compelling reasons pay less attention to DEXA scores and move to a healthier lifestyle. http://www.gilliansanson.com/
If you have further questions or you would like to join our support group please feel free to email me at bebonestrong@sequoiahealth.com.
Woody McMahon
- By millie123
- Posted November 4, 2009 at 5:20 pm
- Report post
I would suggest further testing to rule out celiac disease, gastro problems, Crohn's disease, and problems with thyroid or parathyroid. The vitamin D levels could be lifted more to a level of 50ng minimum (regardless of what some doctors say). Refer to the Vitamin D Council website guidlines here. Also search for discussions on megadosing with D. My bones started remodeling on their own last year after 4 months supplementation at 50000IUs weekly. If he can remain in a supervisory position and avoid the lifting and twisting, his scores are no worse than many on here and much better than some. I would personally not use the drugs recommended by this doctor except as a last resort.
Add to the discussion