Monday, April 24, 2017

Sky: Drugs

Dr. P barely skips a beat from letting me know my probable diagnosis: Likely early stages of Alzheimers Dementia, with Mild Cognitive Impairment, before launching into his offerings for “treatment.”

The quotation marks here indicate sarcasm, because there is no treatment. 

No Treatment. No Treatment. No Treatment. No Treatment.

Despite huge efforts, Alzheimers Disease (AD) remains incurable, progressive, and fatal. There are no drugs to stop the progress of the deterioration or to build back brain capacity. 

Dr. P explained in his kindly, respectful manner that he would like to put me on Aricept, the most commonly prescribed drug for Alzheimer’s. The drug “works” by changing the chemistry of the brain, adding Cholinesterase inhibitors to increase acetylcholine levels in the brain to hopefully slow down the process of neuron decay and death.

Aricept was one of the first drugs approved by the FDA for Alzheimer's “treatment." (Now there are four, most of which hope to achieve results with the same strategy as Aricept.) The original tests, as well as some followups to verify Aricept’s efficacy were paid for by the major drug manufacturers. These tests resulted in broad claims about slowing the progress of AD as well as reducing the extent of cognitive problems. Later, in 2000, a major study was conducted in Great Britain to evaluate the cost effectiveness of Aricept. The study meant to confirm that Aricept had a place in their National Health system of AD care. 

Double-blind tests were administered to hundreds of people who had mild to severe Alzheimer's, using Aricept or a placebo.The results were discouraging to say the least:

There was a very small (statistically insignificant) difference in scores between the two groups on the standard neurological assessment. (See Taking the Test, 4/3/17, for my experience with it.) There was virtually no difference between the groups as to when the people with Alzheimer's needed nursing home care.

Basically, the study found that prescribing Aricept was a waste of government money. They urged researchers to explore other approaches than Cholinesterase inhibitors, the centerpiece of Alzheimer’s pharmacology.
At best, 50% of people with Alzheimers who take the drug experience any benefit at all. And the “benefit” extends only to a possible slowing down of some of the disease’s symptoms. There is NO reversal of the rate of decline, and NO alleviation of losses and damage, and NO deviation of the course of this disease until it leads to my death. Of course, I might be lucky and die of something else first! 

So, pretty much, the drug is recommended because it MIGHT do Something. Chances are less than 50/50 that there will be any change at all. If it does do something, will I or anyone else, even notice? To top it all off, trials demonstrated that any effects tend to wear off after six to nine months, although occasionally results lasted longer. To accommodate all these possibilities, the social worker at the Memory Center advised that the drug regimen was “lifetime.” 

I’m not at all sure that the drug is the right choice, but I am way too stunned by the diagnosis to have the discussion at this point. I decide to give the meds a try. The doctor tells me that I will take a limited dose for a few weeks. Then, if I tolerate the drug, I should double the dosage.

Aricept is cheap, $4 a month, due to some kind of buying program at Hannaford's, a local supermarket chain. At the pharmacy I feel like a doofus signing all the”necessary forms” with the staff there. This is the first time in my 66 years that I’ve had prescription medicine for anything besides an infection or as a painkiller. The people at the pharmacy are all very nice and seem happy to take me under their wing. I suppose they know my condition from my prescription [DUH] and are giving the Alzheimer's patient extra slack. 

I head home and dutifully take my pills at the assigned times and await the results. Will I be one of the lucky few who notice a change?

Short answer: Yes! 

Longer answer: It’s a change for the worse.

After a few days, I’ve become queasy 24/7. I eat dribbles of banana and bread many times a day and hope I can keep them down. When I go into any building, I first locate the bathroom in case this is where the vomiting will start. My head is fuzzy, my stomach fluttery, I’m generally out of it all day and all night. I just want to sleep all the time. I’m ready to “get over the hump” and become acclimated to the drug. Instead, it gets steadily worse.

A phone call to Dr. P gives me the OK to drop the Aricept, and in a few days I get my regular life back. Now I take daily doses of Vitamin B Complex and CBD oil, and I feel fine.

[PS from Jane: For those of you who have been pregnant, Sky's constant nausea and tiredness reminded me of the first trimester.... eating strange things just to keep something down, and generally feeling worthless. Happily, he didn't have to wait three months to feel better!]

1 comment:

  1. I wish the efforts to understand and eradicate this disease were even greater than they are now. Alzheimer's research is woefully underfunded.