June 18, 2015

Rytary: My Brand New Extended-Release Carbidopa-Levodopa Capsule for Parkinson's

I had my regularly scheduled meeting with my neurologist today. As a result, tomorrow I'll start a trial of Rytary, the new PD (Parkinson's disease) medication approved earlier this year by the FDA.

For good information on Rytary, go to rytaryhcp.com and click on "For Patients" in the right corner.

This development couldn't be better timed for me. As I reported in a blog post last week, I recently switched from the regular carbidopa–levodopa to the extended release (ER) form of the medication. I was delighted to find that this change resolved my problem with blood pressure (BP) spikes during the "off" periods, when the last pill was wearing off and the new one hadn't yet kicked in. The ER pills apparently smoothed out the levodopa delivery enough to eliminate those bp spikes.

I hadn't consulted my neurologist about the dosage and timing of the ER pills. At today's meeting, we decided I'd discontinue what I’d been taking and try Rytary, a new ER pill. Clinical trials have shown these results:
  • Patients with early PD who took Rytary experienced a significant improvement in their ability to move and perform activities during the day. 
  • Patients with advanced PD who took Rytary experienced significantly less "off" time without troublesome dyskinesia (uncontrollable movements) during the day. 
Background on Carbidopa-Levodopa and Me
The carbidopa-levodopa combination is the most commonly used PD therapy. Symptoms of the disease result from the destruction of dopamine-producing brain cells. Levodopa, the gold standard med for PD, is converted into dopamine, replenishing the brain's supply.

Carbidopa enhances levodopa’s ability to reach the brain.

A regular carbidopa-levodopa tablet has 25mg of carbidopa and 100mg of levodopa. In 2009 after my diagnosis, I took three tablets a day -- 300mg of levodopa. Recently, as I tried to resolve the BP spikes, I was taking over 1500mg a day.

Not long ago, I ran out of my stash of regular carbidopa-levodopa pills, and took an earlier prescription for the ER variety. I was pleased to discover that the ER tablets seemed to smooth out the levodopa delivery. My blood pressure returned to the 150/90 safe zone.

I thought the ER pills packed a higher dose of levodopa, so I took a pill every three – not two – hours. But I was wrong; each pill still delivered only 100mg of levodopa. That means I’ve been getting only about 800mg of levodopa every day.

Today's Meeting with the Neurologist
I don't identify my doctors by name. Let's call my neurologist Dr. PD.

After my regular checkup this morning, Dr. PD said I hadn’t performed as well as before on the motor tests. He suspected the issue was undermedication, not worsening PD.

Mostly, I was pleased with how I felt – and my more regular BP -- on these new pills. Still, Dr. PD thought Rytary – the new med -- would deliver levodopa more effectively.

The FDA approved Rytary in January this year. Different from the ER and controlled release versions of carbidopa-levodopa, it contains special beads designed to dissolve at different rates in the stomach and intestines, providing longer-lasting benefits for people with PD.

In clinical trials, Rytary wore off less, thus enabling longer intervals between dosages.

Dr. PD suggested I start with the minimal dosage of Rytary, and recommended I take three pills three times a day at mealtimes. Taking my PD pills three times a day is much more convenient than popping pills eight to 11 times every day… which is what I’ve been doing recently. We also discussed adding a regular carbidopa-levodopa pill at bedtime, a possibility we’ll resolve soon.

Since these are new developments, my neurologist wants to work closely with me as we head down this road. I’ll give him an update in a week, and we’ll meet again in three weeks.

Issues with Rytary
I've begun my research on Rytary, and there are concerns. The success of a new medication like Rytary depends more on the timing and dosage than on the actual formulation of the pill.

The timing of the pill-taking will be critical. Several reports from Rytary users suggest that tinkering may be needed as far as pill popping and mealtimes are concerned. Some users report issues about the protein, fat and calories of meals at pill-taking time.

The potential for adverse interactions between new meds and pre-existing pills is always a concern. I'm glad I recently ditched Azilect (for PD) and meds for BP and cholesterol. Now, I'm down to just one prescribed med (Rytary) and three supplements -- curcumin, ashwagandha and 5-HTP.

As with any medication, Rytary comes with a lengthy list of warnings about possible side effects. One in particular concerns me:
Case reports suggest that patients can experience intense urges to gamble, increased sexual urges, intense urges to spend money, binge eating, and/or other intense urges, and the inability to control these urges while taking one or more of the medications, including Rytary, that increase central dopaminergic tone and that are generally used for the treatment of Parkinson's disease.
Given my proclivity for compulsive/addictive behaviors, let's hope my advanced age and physical disabilities will help keep these urges in check.

I’ll keep you posted as this trial proceeds.


Corinne Bauer said...

Comment re: Rytary

I had. Dry poor response to carbidopa/levodopa ER, but find Rytary to be very hellpful. I have been using it for 2 months and only hope it will continue to be so helpful. For those having insurance difficulties, consider switching to ExpressScripts during the next open enrollment. They will pay for Rytary, so far at a reduced rate; but I hope that will increase with the more common use of the drug. I have gone from needing dosing every two hours to every five hours. This is a major improvement in sleeping and general well being. I would encourage anyone in a similar situation to give it a try.

Unknown said...

Good day were in South Africa can I buy this meds. My sister having PD. Using Carbelev and it makes her muscles very sore. Please help

Madeleen Leus said...

Good day were in South Africa can I buy this meds. My sister having PD. Using Carbelev and it makes her muscles very sore. Please help