It’s the Bones, Stupid

The endocrinologist and gynecologist both gasped at the results of my latest bone density scan. “If you don’t do something, you’ll wind up in a nursing home soon,” warned  the endocrinologist.


A genetic predisposition plus little weight bearing exercise plus the march of time left Carol’s doctors gasping at how her bones looked

They insist that I take either Prolia or Reclast, heavy duty medications known to either slow down bone loss or rebuild bones.  But possible side effects described by the flashy brochures with the pictures of radiant aging actresses, are distressing (flu-like symptoms, weakness – thank you, I already have those) and even hair-raising (osteonecrosis of the jaw), especially for someone who already feels as if she’s suffering from the side effects of something or other. And because these medicines are administered either intravenously or intamuscularly only once or twice a year, who knows how long any side effects might last?

Yes, yes, I know the side effects are “rare”.  But after enduring so many difficult and unsuccessful treatments, like most ME/CFS patients, I can easily imagine the worst possible outcome.

My Internet research into the effect of these drugs on people with ME/CFS has resulted only in speculation and a variety of anecdotes:

    • One patient (Kia) described pain, nausea and hospitalization after an injection of a bisphosphonate {drug that prevents loss of bone mass}, and another trial with Prolia resulting in two months of nausea.
The news was not particularly good  from  the Forums

The news was not particularly good from the Forums

  • Caledonia’s mother had osteoporosis and ME/CFS. She tried Fosamax, which was a shot that was supposed to last 6 months. She had a bad reaction to it, which, of course, lasted 6 months.
  • Dr. Joseph Mercola, the osteopath and alternative medicine proponent, claims that Fosamax is a poison that will eventually make bones weaker and can increase the risk of ulcers, liver damage and kidney failure.
  • Of course, Quackwatch says that “Dr. Mercola’s articles make unsubstantiated claims and clash with those of leading medical and public health organizations.”
  • On Medschat.com, Sandy says that her one Prolia injection made her cfs and fibromyalgia worse, and complains of insomnia, muscle pain and weight gain after the dose. In fact, Medschat.com contains 24 pages of unrelenting misery resulting from Prolia side effects in generally healthy women.

On his website endfatigue.com, Dr. Jacob Teitlebaum describes the FDA alert on the possibility of severe pain after taking bisphosphonates (Reclast):

“The severe musculoskeletal pain may occur within days, months, or years after starting a bisphosphonate. Some patients have reported complete relief of symptoms after discontinuing the bisphosphonate, whereas others have reported slow or incomplete resolution. The risk factors for and incidence of severe musculoskeletal pain associated with bisphosphonates are unknown.”

Enough, already. Am I more fearful of increased incapacitation and pain resulting from a conscious decision to take these meds, than of snapping or melting bones and a bed in a nursing home? I don’t know! It’s the old ‘damned if I do, damned if I don’t’ conundrum. The old ‘out of the frying pan into the fire.’ Help! I’m trapped in cliché land.

Possibly broken bones vs possible side effects vs expensive alternatives - What To Do?

Possibly broken bones vs possible side effects- what to do?

I recently visited Dr. Kate Thomsen (see an earlier post; she’s the hugger in Pennington, NJ who practices ‘integrative medicine’) looking for alternative osteoporosis treatments, and she has me taking a VERY EXPENSIVE supplement from Xymogen, OSAplex MK-7 which contains Calcium, Vitamin D3, Vitamin K2, Phosphorus, MCHC (microcrystalline hydroxyapatite concentrate, which I Googled and found “Mean Corpuscular Hemoglobin”, “Mother and Child Health Coalition” and “Metropolitan Collegiate Hockey Conference.”

Actually, I did find that it’s some kind of bone food.) and Choline. With postage, it comes to  $91.69 a month! I’ve also just added Strontium Citrate from Complementary Prescriptions, a bargain at $23.91 a month.

Of course, I’ve been taking calcium and vitamin D for years and years, and still have sad weak bones. I also recently read an article in The Journal of Bone Metabolism describing studies that show “there is little substantive evidence of benefit to bone health from the use of calcium supplements” and recommending “the targeting of safe and effective anti-resorptive drugs to individuals demonstrated to be at increased risk of future fractures.” (JBM, Feb. 2014)

So what’s “safe and effective” when you have ME/CFS????

With a genetic predisposition to osteoporosis, and now in my 15th year of ME/CFS, a condition that prohibits weight-bearing exercise, which we are constantly told is a big factor in preventing bone loss, I seem doomed  to brittle and porous bones. Apparently unloading the dishwasher or folding some laundry doesn’t help much to promote bone formation.


Dr. Rey, her ME/CFS doc, offers a third way.

Newsflash: I just returned from my yearly visit to Dr. Irma Rey at the Institute for Neuroo-Immune Medicine at Nova Southeastern University and, of course, I asked if her ME/CFS patients took either Prolia or Reclast. She surprised me by replying that they did, and by supporting the catastrophizing of the endocrinologist and gynecologist. “You don’t want to suffer broken bones on top of everything else,” she advised, but seemed evasive about side-effects.

She suggested I try a course of Forteo, another osteoporosis drug that is injected every day for two years. That way, any side effects I might experience (hopefully) won’t last as long after stopping the medicine.

A shot every day?! Ouch, ouch, ouch. Two years worth. 700 days.

I guess I can do that. I won’t like it, but I can do it.

I’m still ruminating.






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