Patient Comments: ALS - Treatment

Have you or someone you know tried riluzole? Please discuss your experience.

Comment from: Joy, 65-74 Female (Patient) Published: October 02

I was diagnosed with ALS (amyotrophic lateral sclerosis) 15 months ago. At that time riluzole was prescribed. I found I could not tolerate it. I have tried it again last month with the same result. I am so fortunate that my progression seems to be very slow. I have a great doctor and a team of wonderful people working with me at ALS clinic. Most of all, my husband! He is my right hand man and my cheerleader.

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Comment from: Isobel, 65-74 Male (Caregiver) Published: June 12

My late husband was diagnosed with ALS (amyotrophic lateral sclerosis) when he was 67 years old 8 years ago. He lived for eighteen months. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for the sensitive care and attention of his primary physician, there he would have died even sooner. There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased his anxiety a bit. The disease requires a huge caloric intake similar to that of a professional athlete but the disease devours the fat and muscles causing a skeletal appearance, huge weight loss which weakens the patient more. There is nothing positive about ALS except that as a caregiver, nothing else will ever faze me again. I have faced Goliath.

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Comment from: Tracy, 65-74 Female (Caregiver) Published: July 24

My mother was diagnosed with ALS in May 2008. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 73 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance until the last two weeks of her life. All the while she continued to take the riluzole. If it bought my mother any time, we will never know. Her neurologist told us that if she couldn't afford it, there was no real need to take it.

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