Coping with Lupus: Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture. Everyone with lupus should become knowledgeable about osteoporosis. We all need either a treatment plan that reduces bone loss risk, or to treat and possibly reverse bone loss. For years, my bone density remained above the normal range, but after many years of steroid treatments for lupus, my bones were finally losing density and needed more attention.
My diet has always included large amounts of natural calcium, including milk, yogurt, cottage cheese, cheese and many fresh vegetables that provide rich sources of calcium. Even though my bone density has been good over the years, usually 100% to 110% of the normal range, my rheumatologist has insisted that I include bone-supporting supplements of calcium and vitamin D in my daily routine. He followed me with periodic bone density tests as medically responsible due to my continued dependence upon daily low dose steroids as part of my overall lupus treatment plan.
Declining bone density and osteoporosis medication – a rare bad reaction!
However, at my first signs of declining bone density exam results, dropping several percent below normal, my rheumatologist prescribed Actonel, in a once-a-month dose osteoporosis medication. Unfortunately, I had an extremely bad experience with this drug! After taking my first dose, within just a few hours I felt the onset of the most severe deep skeletal bone pain I have ever felt in my life (or even imagined in my worst nightmares.) Every single bone in my body hurt, and even the entire length of every rib, by skull and my jaw hurt intensely. There was no escaping or distracting myself from the overwhelming reaction I experienced to the osteoporosis drug.
The debilitating and excruciating bone pain lasted for several days, and I lost a whole week of work remaining in bed on pain medications, just to cope with the drug reaction to Actonel. The patient drug information sheet includes a warning about the possible rare side effect I experienced. My doctor immediately took me off the offending osteoporosis drug. Even if my doctor had not advised me to stop taking Actonel, I would have made that decision all on my own! That was clearly a “no brainer!”
Negotiated non-compliance with an alternative
A couple of months later, my doctor prescribed Boniva, a similar drug. After filling the prescription, I just refused to take it. I just didn’t have the heart to try again. I looked at the unopened package over and over, picked it up and read the same warnings on the package that were on the Actonel package, and even once broke the blister and held the pill trying to convince myself to take it. I just simply “chickened out” and tucked the pill back into the blister pack and placed it back on my medicine shelf. (It sat there for two more years, not taken.)
Stubborn, gutless wonder…
After my first experience with this class of drug, I could not muster up the courage to try Boniva. Despite my rheumatologist’s protests, I refused to take any another similar drug. This was one of my most notable times of being a completely non-compliant patient, when I was absolutely unwilling to try something my doctor prescribed.
So, instead I negotiated insistently with my doctor. I proposed that, if after six months of increased weight-bearing exercise and increased calcium and vitamin D supplements my next bone density exam did not return to the normal range, then, and only then I would give another osteoporosis drug a try. He agreed. If my next bone density exam improved to a normal range, he would let me forgo any new osteoporosis drugs.
Weight-bearing Exercise and Supplements
My increased efforts to build my bone strength were ultimately successful, and so far, I have succeeded in keeping my bone density at normal or near normal levels without adding osteoporosis medications. A couple of years after the Actonel experience, I finally threw the unused Boniva prescription away. Exercise, a calcium rich diet and calcium supplements that include vitamin D are still critical. I hope that this approach will always be adequate, but if not, I must keep my promise to my rheumatologist, and will be willing try another drug to preserve my bone health and reduce fracture risks.
For many lupus patients, diet and supplements are inadequate to prevent declining bone density, but thankfully, the extremely negative reaction to osteoporosis medications that I experienced is extremely rare, and is not the norm. Most patients should definitely try taking the drugs their doctors recommend to treat their osteoporosis or reduce risk of potential bone loss.
Learn about Bone Loss
A good place to start for every lupus patient is to read more about lupus and bone loss. Here are some very reliable sources of patient information about osteoporosis and Lupus:
Don’t Forget to Put on Purple Today Before you Leave the House!
The next thing to do is to talk to your rheumatologist about your bone loss risks. You may have normal bone density and might be dodging the bone loss bullet, but perhaps you are experiencing progressive bone loss. You and your doctor should discuss your status and the health of your bones, and decide if a treatment plan for osteoporosis is right for you. You rheumatologist will probably recommend a bone density scan. The scan is painless and takes just a few minutes in the doctor’s office or radiology lab.
Remember: Whatever else you do to protect your bones, just don’t forget to do regular weight-bearing exercise!