By June Price

(Updated April 2011)

Break a leg!” Thespians may consider that phrase good luck, but to us it’s anything but. A broken leg — any broken bone — can mean months if not years of problems. The normal six- to eight-week mending period can easily double for wheelchair-using adults due to the bone-weakening disease called osteoporosis.

Osteoporosis is a skeletal disease characterized by decreased bone mass, deterioration of bone tissue and increased susceptibility to fractures. The National Osteoporosis Foundation reports there are 10 million people with osteoporosis in the United States, and an additional 34 million with low bone density. Two million of these are men, although the risk for osteoporosis in men is much lower.

Immobility coupled with aging is a blueprint for osteoporosis. For example, one study shows a 30 percent decrease in bone mass within the first 18 months after spinal cord injury, men included. But one single factor — menopause — sends osteoporosis into overdrive.

Our physicians recommend treatment — calcium supplementation, estrogen replacement therapy or non-estrogen therapy. These sound like good options, but are they? Are there any studies to show the effects of these drugs on women who haven’t walked or stood for many years? Or who have never walked? How do these drugs play out with our bodies?

Sadly, little data exists. Once again we must educate ourselves as to what is right for us. Margaret Nosek, executive director at the Center for Research on Women with Disabilities at Baylor College of Medicine in Houston, Texas, couldn’t agree more. She says, “The available advice is so conflicting and confusing on this that I think the best advice would be to read up on it as much as you can and consult other women in your immediate family.”

When we think of building strong bones, we think of drinking milk. This works just fine for the first three decades of our lives when more bone is formed than lost. At about age 30, replenishing slows and deterioration begins. Many factors affect the speed at which this occurs, including gender, race, age, genetics, smoking, diet and exercise. Osteoporosis can also result from a number of other conditions, notably immobilization.

A 2005 Archives of Physical Medicine and Rehabilitation article offers greater evidence on the issue of low bone mineral density and risks for osteoporosis in women with physical disabilities. Suzanne Smeltzer, one of the article’s authors and Professor and Director at the Center for Nursing Research at Villanova University’s College of Nursing, explains, “Osteoporosis is not on the radar of many health care providers caring for women with disabilities; as a result, they are screened less often that women without disabilities. They also develop osteoporosis at a younger age than those without disabilities.”

Calcium supplements or calcium-rich foods alone cannot prevent bone loss. The calcium must be absorbed. Vitamin D enhances the absorption of calcium as does magnesium, vitamin C, niacin, zinc, silicon and boron, all of which have been shown to slow bone loss in postmenopausal women.

High intake of protein, refined sugar and sodium are all associated with loss of calcium. A diet of vegetables and fruits with few fats and animal proteins is thought to be the best for avoiding bone loss, yet studies show that poorly nourished elderly people with bone fractures heal better when protein is added to their diet. Clearly, a balance must be found.

Even an exceptionally good diet and full supplementation will not build stronger bones without one key element: exercise. Regular, weightbearing exercise remains the cornerstone of osteoporosis prevention. Low-impact aerobic exercises such as swimming and bicycling don’t do the trick.

Our inability to bear weight means that calcium that is not absorbed by the bones goes to the kidneys, where it forms stones. The best antidote is drinking lots of water. Taking calcium supplements with meals also reduces the likelihood of stone formation.

But even calcium with exercise is not enough. Over several years, Dr. Claus Christiansen periodically measured bone densities of a large group of early menopausal women, and found that calcium supplements alone did not prevent osteoporosis. In that study, participants on supplemental calcium lost bone density only slightly slower than those taking no calcium. The study concluded that estrogen replacement is the most important preventative measure against osteoporosis.

For years, Premarin was the estrogen-replacement drug of choice. Made from a pregnant mare’s urine (hence, the name), it not only prevents bone loss but also helps women deal with other effects of menopause including fatigue, hot flashes, lack of energy, depression, loss of libido, dry skin, loss of vaginal secretions and changes to the vaginal mucus membranes.

But Premarin has several drawbacks. Women who take it have an increased risk of uterine cancer and breast cancer. To reduce this risk, progesterone is added for all women who still have their uterus. Women who take Premarin also gain weight because estrogen enhances the body’s ability to retain water, something none of us needs! Furthermore, the drug shouldn’t be used by women with a history of blood clots in their legs.

There is also the issue of duration of use. A report published in the March 1993 New England Journal of Medicine showed that short-term use of estrogen during menopause does not adequately protect against osteoporosis. The study examined bone density in women 75 and over and found very little difference between women who had taken estrogen for 10 years or less and those who had taken no hormone treatment.

Estrogen works its preventive wonders only if taken for many years — the longer, the better. To prevent osteoporosis, for instance, a woman must use estrogen continuously for at least seven years, according to recent data from the Framingham study in Boston. According to Dr. John Gallagher, an endocrinologist at Creighton University in Omaha, Neb., 95 percent of women on hormone replacement therapy take it for three years or less, not long enough for any positive effects on their bones.

It is now standard practice to give estrogen to women at high risk for osteoporosis — approximately one in two U.S. women. Gallagher recommends routine bone-density tests and at least 10 years of estrogen, beginning at menopause, for those with fragile bones. To gain the full benefits of estrogen a woman must expose herself to many years of possible side effects.

Designer Estrogens
Enter “designer estrogens,” or SERMs (selective estrogen receptor modulators). They utilize only those estrogens that bind to the bone or heart, not to the breast or uterus, thereby, in theory, not increasing the risk of these cancers.

Evista (raloxifene hydrochloride), the most popular of these drugs, was developed by the pharmaceutical giant Eli Lilly. Evista is readily prescribed for women — including wheelchair users — to treat and prevent bone loss. Yet Lilly cautions, “Being still for a long time…can increase the risk of blood clots. EVISTA may add to this risk. Stop taking Evista at least three days before a planned surgery or before you plan on being still for a long time.” Furthermore, the warning states, “You should only start taking Evista again when you return to your normal activities.”

If hot flashes are your reason for taking estrogen replacement therapy, you should know that in clinical trials, 28.7 percent of women taking Evista complained of hot flashes.

And Evista’s bottom line? It increases density only about 2 to 3 percent and lessens the incidence of your first vertebrae facture by 55 percent.

Fosamax (alendronate sodium) by Merck — in a class of drugs called bisphosphonates — is a nonhormonal drug that can prevent bone loss. It’s not well tolerated in some, due to its side-effects, but is sometimes prescribed for women who should not take estrogen.

Research indicates that Fosamax is almost as effective as hormone replacement therapy, and more effective than Evista. It reportedly increases bone density by roughly 2 to 4 percent, and may also prevent bone loss in men.

But Fosamax, too, comes with a long list of caveats. Merck warns that the drug must be taken after getting up for the day and instructs the user to stay fully upright, either sitting or standing, for at least 30 minutes afterward. The pill must be taken whole, with strictly a full glass of water. A lot of us can’t do that.

Is it worth the risk? This is not a short-term experiment, it is a lifelong commitment. In one study, women who took 20 mg of Fosamax were switched to placebo after two years. During the third year, they gradually began to lose bone, suggesting that the drug may have to be taken indefinitely. There is evidence that Fosamax can accumulate in the skeleton if taken over many years, although doctors aren’t sure if this is harmful. And like other bisphosphonates, Fosamax can cause nausea and difficulty swallowing. Another potentially serious side effect is damage to the esophagus, which in some cases requires hospitalization. Although these problems are relatively rare, they are major concerns for those with respiratory problems, swallowing difficulty, tracheostomy, or who are at risk of aspirating.

Calcitriol (another of the bisphosphonates, sold as Rocaltrol) is a potent form of vitamin D and a regulator of calcium. Preliminary studies indicate it increases calcium absorption and bone mass in the spine and forearm. Other drugs including etidronate (Didronel) and pamidronate (Aredia) seem to reduce spinal fractures, but the FDA has yet to approve either for the prevention of osteoporosis.

Calcitonin, derived from salmon, is a type of hormone that stimulates bone production and is approved by the FDA to prevent further bone loss in postmenopausal women who already have osteoporosis. It is sold under the brand names Calcimar and Miacalcin. One advantage of calcitonin is its analgesic properties, which help relieve the bone pain associated with osteoporosis. It is available both as a nasal spray and by injection. Side effects include headache, dizziness, diarrhea, skin rashes and nausea. Skin redness is a common side effect of the injections, and nosebleeds, sinusitis and nasal membrane inflammation of the spray. Many people develop resistance or allergic reactions after using calcitonin for more than a year.

More Alternatives
Soy products (not soy sauce, however) are high in plant estrogens, called phytoestrogens.

Dehydroepiandrosterone (DHEA) is a hormone and a precursor for both estrogen and androgen in nonreproductive tissue. In one test, hip bone density increased by 2 percent in women who applied a 10 percent DHEA cream to their thighs for one year. More studies are needed to determine risks. Dosage recommendations differ for men and women, and monitoring of DHEA levels with regular blood testing is recommended.

For 30 years sodium fluoride has been known to stimulate bone-building cells, but its use dropped off after studies suggested that it didn’t reduce fractures. A new slow-release sodium fluoride, however, awaits FDA approval. A study published in the Annals of Internal Medicine found that women who combine slow-release sodium fluoride with calcium citrate supplements gain bone density in the spine and reduce their risk of future spine fractures.

Still, many other options exist amongst several forms of the same medication. The puzzling choice in choosing the correct treatment relies heavily upon each individual’s health and lifestyle. See sidebar for more alternatives to consider when consulting your physician about osteoporosis treatments.

For people with disabilities, osteoporosis is not only an effect of aging; it is an effect of immobility. Yet traditional treatments appear to be either too dangerous or ineffective for us.

Calcium cannot be absorbed if stress is not placed on bones through active, weightbearing activities — an impossibility for most of us. Hormone placement therapy, like Premarin, increases the risk of breast and uterine cancer. The “designer estrogen” Evista shouldn’t be taken if immobile, and Fosamax requires swallowing the pill whole with a full glass of water while standing or sitting upright for 30 minutes.

With all modern medicine has to offer the aging — from Retin-A to Viagra — it signifies little for us. A youthful skin or healthy libido is of little use if our skeletons begin to crumble. At this time, there appear to be more problems than solutions.
“It’s as if no one is taking our issues seriously,” Nosek explains. “I look forward to the day when there is a body of literature pointing toward the most effective treatment options to minimize osteoporosis in women with mobility limitations, and the day when this knowledge is readily available to and accessed by primary care physicians.”

It therefore becomes incumbent on each of us to independently research all the options and then discuss our concerns with physicians willing to help us find workable solutions for meeting the ultimate disability: aging.

Other types of treatment
There are even more options for treating osteoporosis and menopause, but they all have their drawbacks and limited to no information on their effect within the disabled community. Here’s a brief listing of some other types of treatments to begin your research.

* Boniva: a monthly oral tablet or a quarterly IV medication that can increase bone mass and lessen fractures. Keep in mind that you should not take Boniva if you have esophageal problems or cannot sit or stand for at least one hour. Some side effects include trouble swallowing and digestives issues. No evidence has surfaced regarding prolonged usage or optimal duration.
* Actonel: a daily medication given to increase bone mass and help reduce the chance of having a spinal or non-spinal fracture. If you have certain esophagus issues, cannot sit or stand upright for 30 minutes or drink a full glass of water with the medication, then Actonel is not suggested. Some side effects include upset stomach or back, muscle, bone or joint pain. No evidence has surfaced regarding prolonged usage or optimal duration.
* Relcast: a yearly IV treatment to help strengthen and protect your bones. This medicine should be coupled with daily calcium and vitamin D supplements. Kidney problems and muscle or joint pain can be side effects of Relcast. No evidence has surfaced regarding prolonged usage or optimal duration.
* Forteo: a daily injection that can help build new bone. Be sure to let your physician know of any other bone disease (other than osteoporosis) that you may have. Taking Forteo can cause joint aches and pain and some dizziness after injection. Continuation of this drug is not recommended after two years.
* ProliaTM: an injection given every six months that can help strengthen bone. Two of the most common side effects are back pain and bladder infection. Prolia may affect your immune system and have greater implications for those already having a weakened immunity. No evidence has surfaced regarding prolonged usage or optimal duration.

Keep breaks to a minimum
In “Osteoporosis Update: Avoiding the Breaks,” Bob Vogel explores the dangers of osteoporosis and how our lifestyle can bring wear and tear on our bodies. Our age can be a large factor in the increase of breaks, yet at any age, we need to prevent the fractures as much as possible.

  • Check out your chair. Keep an eye on how you are sitting and how protected your feet and legs may or may not be. You want to feel steady and not risk falling out or getting twisted amongst the molded frame.
  • Keep note of your environment. Avoid too many abrupt turns without catching a glimpse of what you might bump into or get stuck on in the process. Understanding spatial constraints, particularly at chair level, is key to moving flawlessly.
  • Think before you transfer. Make sure your chair is steady and locked and that you’re close enough to your transfer location. Be sure to take a second and survey what you or your clothing might get caught on mid-move.
  • Caution while you dress. Whether it’s in or out of your chair, throwing on your clothes can be a workout and require some swift maneuvering. Take your time and make sure you’re stable and safety situated.
  • Watch out when you stretch. Don’t bend or twist your legs and body too severely since that can apply extra stress.

Center for Research on Women with Disabilities: 713/798-5782 or toll-free 800/443-7693;
Health Promotion for Women with Disabilities Project: 610/519-6828;
National Institutes of Health: 301/496-4000;
National Osteoporosis Foundation: 202/223-2226 or toll-free 800/231-4222;
Osteoporosis Update: Avoiding the Breaks” (New Mobility)