Inosine, Rytary, Alpha-synuclein…Oh, My!

If you aren’t familiar with the subjects listed in the title, you must have missed the September meeting.  Look at all you missed!

It was wonderful to be back together.   We had a full agenda, including a visit by neurologist Drew Falconer, MD. Dr. Falconer and his partner, Sean Rogers, MD, along with neurosurgeon Mahesh Shenal, MD are establishing a new movement disorders practice in Northern Virginia through the INOVA system.  As part of their outreach to the community, they’re speaking to local support groups. As it turns out, conversations within the group and with Dr. Falconer concentrated on similar topics  .  Summary for these subjects are intertwined.

The first half of the meeting was open member discussion,  which always guarantees I’ll  learn something important.  For example, we’ve all learned by following member D’s path through DBS and her most wonderful outcome.  For myself, I’ve gotten ideas of what to look for in the neurosurgeon to perform the procedure (responsive, caring, experienced, positive patient feedback  for her) and the steps in preparing for the procedure, from when your doctor suggests it might be time, through the cognitive testing and evaluation of  symptoms to assess whether you are a candidate. D’s a picture of a positive result of DBS.  Her medicines have been cut back and spread out and she walks freely with  two naturally swinging arms.  Its a beautiful thing to see.  Dr. Falconer supports DBS as a very accurate way to tailor technology to treat exactly how Parkinson’s Disease presents itself in each patient.  The next DBS, still on the horizon,, will be a closed-loop system.  Adding leads will allow it to be tailored as needed.

When one of our group members was curious to know if anyone knew about Rytary. the new time- released levodopa-carbadopa which came out this year.  I know that more than one member takes it successfully and one, G, was quite enthusiastic about it, saying that she was pleased from the beginning and feels like as her body adjusted to it, her results improved even more. When we discussed DBS later with Dr. Falconer, he expressed his belief that a most positive outcome can come when a patient has had  DBS to level off the fluctuations you get from medicine, combined with Rytary.  He also shared that the manufacturer of Rytary has an even better version in the works.

What supplements do you take?  That question was interesting in the variety of answers .  Most take a daily multi-vitamin.  A large number of us take a D3, a calcium and B12.  The question of what supplements he’d suggest was posed to the doctor as well.  His answer was a daily multi-vitamin.  He pointed out that many claims haven’t been proven and the medical community  is a little shy of endorsing  supplements after the experience  with CoQ10, a costly supplement that some studies showed might slow the progression of Parkinson’s Disease, a claim which wasn’t proven.

Our group also discussed Inosine, a dietary supplement which has been on the market for quite awhile but now has funding for stage 3 trials.  It is the precursor of the antioxidant urate and studies have shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression.  There’s not a single person with Parkinson’s Disease who doesn’t want more time, to slow the disease. For a more scientific explanation, read the FoxFeed blog of the Michael J. Fox Foundation. Warnings are out that Parkinson’s patients should not rush out and purchase Inosine because it can cause side effects like high blood pressure, kidney stones and gout.  We are advised to discuss it with our doctors first.

Also discussed in the  group and later with the doctor was alpha-synuclein. Researchers believe that alpha-synuclein is responsible for cell death.  For that reason, its Public Enemy Number 1 right now as researchers look  for ways to slow or stop disease progression. One possibility is nilotinib,  a chemotherapy treatment for adults with leukemia    Studies show that it may have the  potential to treat people with Parkinson’s disease. On the plus side, this drug has already been tested and proven safe in clinical trials for leukemia, which could expedite its use in PD. But before it’s an option for PD, the next step will be to conduct small clinical trials to evaluate nilotinib’s safety in people with PD and its potential for easing motor symptoms.  Other research labs are also looking for the best way to make the body prevent or collect the “clumps”, known as lewey bodies.  Its great news for us that more than one company is on the case, trying to figure out the best way to deal with the alpha-synuclein.  Hopefully, competition will increase productivity and speed in finding the best solution.

We thank Dr. Falconer for sharing his time and his knowledge with us during this most informative meeting.  It’s always a great chance to learn in a small-group setting and we welcome the opportunity.

See everyone in October!