Monday, December 17, 2012

Supplements: A Cautionary Tale of Betrayal

When I heard the news, I was speechless. How could basic supplements cause this? About 80 percent of people with multiple sclerosis take vitamins and dietary supplements for their disease—so yes, I told my neurologist, I took a host of multi-colored pills every day. Fish oil. Glucosamine. Chondroitin. Daily multivitamin. Melatonin. Others…. “Stop them all immediately,” he said. So I threw each pill bottle into the trash, probably a hundred dollars worth or more. There wasn’t anything else I could do.
In the spring of 2009, my multiple sclerosis was behaving badly (imagine if Charlie Sheen and Lindsay Lohan went out on the town together). Two relapses in the past year and an active MRI had convinced my doctors that the Copaxone I was taking, which has worked so well for so many people, was just not slowing my disease enough. But there was a new drug in Phase III trials called alemtuzumab, a cancer drug also known as Campath, that looked incredibly promising for MS in early testing. Fortunately the trial was still recruiting—and I looked to be a perfect candidate.
I sailed through the battery of qualification assessments. All that remained was a simple blood test to make sure my body would have no problem handling the monoclonal antibody. And that’s when I got the phone call: there was indeed a problem. Several key values measuring liver and kidney function were low—below the minimum requirements for the study. Something was throwing my body out of whack. And that something was likely one of my supplements, the very supplements that I thought might help me with my disease. I was mortified. I did this to myself, and now my only hope to get into the trial rested on a retest in four weeks.
So I shaved my head (hey, I was grabbing at straws), stopped all supplements (which ones were the culprit I’ll never know), and waited impatiently for my luck to change. It didn’t. Although my numbers were improving, it wasn’t fast enough. My MS had turned aggressive—and now I was permanently excluded from a trial testing arguably the most potent MS drug in the pipeline (UPDATE: releasing soon under the drug name Lemtrada). Curse words and tears flew until I remembered there was one other clinical trial that I might qualify for—one that I had dismissed earlier as too crazy, too desperate. It didn’t seem so crazy or desperate anymore. And, it goes without saying, those supplements were staying in the trash can.
Originally published May 18, 2011, edited for clarity.


life well Lived said...

Campath (lemtrada)looks effective, but it's a bear of a treatment. I was reading an hour by hour account of a guy going through it, and it was brutal. My wife and I agree that if I ever go through it, I will get a hotel room near the hospital where I can puke and be miserable by myself. It will be a "See you in week" ordeal with daily check-ins.

I think I get your experiences with copaxone. It didn't work for me either, and after a couple of flares I stopped it. it turns out losing 16 pounds in a week is a bad thing if you're not on biggest loser. I wasn't. I just lost the ability to swallow unless it was hot or carbonated.

In any event, I like the premise of the peace. Know what you are putting in your body and ask how it will interact with everything else.

Dave Bexfield said...

LWL, I'm pretty sure Lemtrada is far more mellow than the method I ended up going with, ha, so I guess it's all relative. The study results so far have been very impressive. I wonder how helpful Lemtrada would have been in my case, although I may have been put on the Rebif control arm anyhow....

Niko said...

It's interesting to consistently hear from fellow MSers about problems with their liver and kidney, particularly the liver, as well as circulatory problems. I wish there was more research done on the effects of supplementation on these organs, especially when I think that many nutrition books (such as described in Chinese medicine) will link a sick liver to deficiencies and weakness (or "cold qi").Why the ongoing liver problems and deficiencies with all our supplements...? (This is where my mind begins to implode from the complexity of the issue.)

Dave Bexfield said...

Niko, the few numbers that were off may not even be directly associated with my supplements. But it appears there was some relationship, as the bad blood work went back up after I went off. With zero regulation of the supplement industry, there is no way to truly know what really helps ... and what really hurts.

Niko said...

(Oh my gosh, Google advertising spam! vital resv)

It is very unclear and confusing what each individual needs for each unique condition, when it comes to supplements, let alone if we need them at all. Inuits get all the need from the meat, fish and fats and live an average lifespan...and we are gobbling down superfoods and little herb pills? Confusing... I'll be stopping to see a holistic nutritionist to figure this out asap! :)