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06/12/2007: "Longevity Part 3"

This is the third blog posting where I am exploring the question "Why is ALS progressing so slow in me?" Many people have asked me what medications and supplements I am using as if I have found a "cocktail" of drugs that is helping me. I am including a list of all my medications at the end of this post and as you can see, there is nothing exceptional about it. Just the usual medications to help deal with the symptoms and supplements at regular doses. I have heard of PALS using vitamin E and C as well as other antioxidants at high doses but to me the side-affects and damage that it can cause is just not worth it. I think that you have to try anything that might help as long as it is safe and you do so with moderation.

I am taking Rilutek and have been for about 9 years now. Rilutek is supposed to be protecting my neurons from being destroyed, so maybe it is helping to slow the disease progression down. It has been proven to be safe but the jury is still out on it's value. It is amazing and very sad that in the 10 or so years since Rilutek has been approved that there is still nothing else approved to treat ALS. I participated in a drug trial for BDNF when I was first diagnosed. The trial went well and the numbers looked good until it went to the FDA for approval. There have been so many promising drugs "shot down" since then as well. It is heartbreaking for PALS as well as the researchers.

I think that the point to this posting is that there is no wonderdrug for ALS yet. The medications I take are wonderful in helping me to deal with the disease and I would not want to be without them but are the medications I take the reason for my longevity? I seriously doubt it......Debbie

Prescription Drugs:

Albuterol Sulfate/ via nebulizer/ as needed
Ipratropium Bromide/ via nebulizer/ as needed
Ambien/ 5 mg/ 1x day at bedtime
Miacalcin/ 200 iu/ac/ 1x day
Ditropan/ 5 mg / 2x day
Rilutek/ 50 mg/ 2x day
Baclofen/ 20 mg/ 2x day
30 mg/ 1x day at bedtime
Amitriptyline/ 75 mg/ 1x day at bedtime
Prozac/ 40 mg/ 1x day in morning
Lorazepam/ 1/2 mg/ 2x day
Quinine Sulfate/ 324 mg/ 1x day at bedtime
Nasonex/ 50 mcg/ 1x day
Miralax/ 17 g/ Every other day as needed
Folic Acid/ 1 mg/ 1x day
Prilosec/ 20 mg/ 1x day
Darvocet N100/ 100-650/ As needed for pain

Supplements:

Multi-vitamin/ 1 tablet/ 1x day
Selenium/ 100 mcg/ 1x day
Vitamin E/ 400 IU/ 1x day
Vitamin C/ 500 mg/ 2x day
Zinc/ 50 mg/ 1x day
Calcium w/Vitamin D/ 600 mg/200 mg/ 2x day