Monday, February 28, 2005

Taking Charge of Your Health: New MS Drug Pulled

I have lived with Multiple Sclerosis for about 16 years. Back in 1989 they had no drugs that specifically targeted MS. After several weeks of outpatient treatment with Prednisone followed by a 10-day stint in the hospital being pumped full of Cortisone, I vowed that I would never willingly succumb to such treatment again.

I have been greatly blessed during the ensuing years to avoid drug treatments for my condition. My main method of intervention has been physical fitness. I strive to maintain a healthy lifestyle focusing on disciplined nutritious eating and daily exercise. So far, I am doing remarkably well and have avoided disabling symptoms. I regularly participate in activities most people with MS don’t even dream about doing.

I have repeatedly been stunned when confronting negative attitudes regarding the use of diet and physical exercise to treat MS. Despite an emphasis on the importance of exercise for those with MS (see National Multiple Sclerosis Society brochure), many simply refuse to consider it to be a worthwhile pursuit. Others can’t visualize themselves doing it (or their patients doing it in the case of health care providers). Some people I know would rather deal with a lower quality of life than exercise healthy self discipline.

The saddest cases I know of are people that are languishing away while waiting for modern science to develop some miracle cure. My educated guess is that they will be waiting a long time. Many people have invested a lot of hope in the MS drugs that have been developed in the last 15 years. Each drug has been touted as a miracle, but the realities are less exciting. Each new drug has been able to only somewhat improve the quality of life for a percentage of MS patients. All of the drugs have undesirable side effects.

The most recent wonder drug to hit the market was Tysarbi, which was released to the public less than four months ago. Unfortunately, this drug was pulled from the market today following the death of one patient and the development of a potentially fatal neurological disease by another patient (see AP story). (Note: MS is a neurological disease, but it is seldom fatal. People with MS usually die of other factors.) Drug makers suggest that they hope to release Tysarbi again in a few months with new guidelines.

My suggestion to others with MS is to quit waiting for the next wonder drug to come along. Take responsibility for your health. Do the best you can to eat right. Develop an exercise program along the lines suggested by the NMSS. Then stick to your program. Don’t merely take your doctor’s word on a prescribed MS drug. Do some research on the drug yourself and decide whether you think it’s worth trying. If you decide to try it and it doesn’t work well for you or doesn’t provide the desired benefit, quit taking it.

I’m not anti-doctor or against appropriate drug therapy. What I am against is relinquishing responsibility for individual health to our health care system. The system does certain things very well, but to get the most out of the system we need to approach it as consumers rather than as dependents. Dependents merely go along with what they’re told is best for them. Consumers educate themselves and make informed decisions about what products are most beneficial to them. Nobody has greater interest in your health than you.


Anonymous said...

Thanks for your thoughts. My sister was diagnosed with MS about 9 years ago. Since then she has been on and off medication (mostly off). She can't afford it now. But I wonder if she knows about the excercise program. I will refer her to this site, and hopefully, she too can do it drug free.

Anonymous said...

I agree with you that diet and exercise are key. This is the reason I follow the Swank MS diet with a few modifications.

I am continuing dismayed to see some with MS who are very sick but who refuse to even consider modifying their diet to include healthy food rather than lots of saturated fat and junk.

I guess many are intent upon working hard to dig an early grave with their teeth.