July 24, 2015

Consultation with My Neurologist: From Rytary to the Rest of My Life

If you have Parkinson's disease, you typically see your neurologist every three or four months for a checkup to see how you're doing, or -- more likely -- how you're deteriorating. After most of these meetings, I usually grouse to family and friends about not being able to have a nice chat about things on my agenda, since the neurologist is spending all his time entering data into his computer during our brief time together.

I recently mentioned my frustration about this issue, and the neurologist suggested, "Why don't you just schedule a separate consultation meeting?"

What a brilliant idea! I did, and we met last week.

I brought a list of questions and got answers to them all in less than half an hour. There was no chatter about families, vacations or books, like there was for years with a former internist. But I got good information, which I'll share here.

Rytary: Off to a Slow Start
Rytary was approved by the FDA in January as a new form of levodopa, the gold standard medication for Parkinson's disease. I'd heard that it can provide longer-lasting benefits and less "off" time than existing levodopa meds, both regular and extended release (ER).

My doc had prescribed rytary to address my "off" time blood pressure spikes on the regular levodopa, but industry giant UnitedHealthcare, my insurance company, refused to cover it

My insurance rep described the procedure my doctor might use to obtain an initial trial supply. But last week, my doctor and I decided not to pursue that option, especially since I've been very pleased with the ER version of levodopa I'd recently started taking. If it ain't broke, don't fix it.

My doctor said he's written only a few prescriptions for rytary. Insurance companies refused to cover them all, except for one mail-order supply.

I belong to two major forums for people with Parkinson's: PatientsLikeMe, based in Cambridge, Mass. and the UK-based HealthUnlocked. Over a week ago, I checked both forums for reports from people using rytary. I saw about 50 reports, with as many positives as negatives. Nobody was as enthusiastic about rytary as I am about the "old" ER levodopa.

Let me know if you'd like a copy of the rytary comments I collected, though you'd get the most current replies if you went directly to each forum and searched on "rytary."

The jury is definitely still out.

Other Meds in the Pipeline
I asked my doctor about other new ways of delivering levodopa I'd seen in my research. Since I won't be using them, he dismissed the question. When I mentioned the new experimental levodopa pump, he asked just the right question: "Do you want to undergo surgery?"

Dementia and Parkinson's
I mentioned a statistic I saw recently: that about 80 percent of Parkinsonians end up with dementia. He said it was more like 40-50 percent. He suggested I ask my geriatrician to administer the standard test for cognitive acuity, and I will.

Using a Blood Pressure Monitor to Check on Levodopa
I mentioned my current craze of logging regular blood pressure readings at home. I've been using those numbers -- and the quality of my handwriting (which becomes cramped as I enter "off" periods) from the extensive notes I keep in my log -- to guide my pill-taking schedule. He said it was okay with him if I wanted to spend my time this way. But I suspect he was really thinking "waste," not "spend." He agreed that, since I don't have tremors, the micrographia (cramped handwriting) is the best indicator of when I'm on and off levodopa.

Deep Brain Stimulation (DBS) and Me
When I mentioned DBS, he said he doesn't  prescribes it very often. But in any event, it almost never is prescribed for those over 80. 

And Saving the Best for Last
There was one thing he said that made the biggest impression on me: The rate at which one's Parkinson's progresses at the outset is unlikely to change. If that's the case, the relatively slow progression of the disease I've experienced so far is likely to continue with. Anything is possible, of course, but that comment was good to hear.

In fact, it's already affecting the way I think about and plan for the future. For some strange reason, I'd gotten the notion I had only a year or two left to live.

Jeez! Now I've got to figure what to do in case I last my normal life expectancy, which the Social Security Administration says is 91.9 years.

I've already started exploring the big question -- should I continue to "age in place" in my home or consider moving to an assisted living facility?  I'll discuss that next week.
Addendum on Rytary: At my Parkinson's support group meeting this morning, two members talked about their experiences with Rytary. One tried it and then experienced nausea so he stopped. Then his neurologist suggested he give it another try. He did. Same result.
The other member had just started rytary a few days ago and he thought he was feeling better.
Both were using sample pills provided by their doctors since health insurance coverage was unavailable.

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