April Meeting Notes–Dr. Sean Rogers Addresses Our Numerous Concerns & Answers All Our Questions

Our April speaker was Dr. Sean Rogers, board certified neurologist and one of the two movement disorder specialists at Inova Medical Center.

By way of a self-introduction, Dr. Rogers said that he and Dr. Falconer are the Directors of the Movement Disorders Program at Inova, which they started three-and-a-half years ago after completing the Fellowship Program at Georgetown. To date, the Inova Movement Disorders Program has consisted of just the two of them so, as Dr. Rogers added with a wry smile, “We have essentially been directing ourselves. But the practice is growing.” They just hired both a nurse practitioner and a third movement disorder specialist who will see patients in Fair Oaks beginning around August. Plans are to expand the practice further west and open another office in the Ashburn area, and to add a fourth movement disorder specialist as well.

Dr. Rogers acknowledged that with their success, there is a backlog of patients waiting to be seen. He wants all Parkinson’s patients to see a movement disorder specialist, so he doesn’t mind working through lunch if someone is having a problem. He encouraged sending a message through My Chart if an appointment is needed prior to when the call center has an opening. Or call Janice, their nurse. The call center can’t see the cancellations on their schedules, but the office can.

Dr. Rogers likes to visit Parkinson’s support groups once or twice a year. There are always more questions that come up after an office visit and he was here today to address them. What follows is a summary of our questions and his detailed answers.

Question on the unevenness of meds and the unpredictability of symptoms:

Symptoms can fluctuate depending on how you feel in general. Sinemet and Rytary (both levodopa meds) are absorbed in the intestines. If you are constipated, the medication won’t be absorbed. If you are stressed, tired, anxious, sick, or dehydrated, it will impact symptoms and how well the medication will work. Being in a hurry, for example, could bring on dyskinesia (as it does for one of his patients).

Levodopa in general has its ups and downs. There can be motor fluctuations and sometimes dose failure, where the medication doesn’t take effect. The goal is to even out the effects of medication. Having longer acting meds in a complementary role, such as one of the dopamine agonists [pramipexole (Mirapex), ropinirole (Requip), or rotigotine (Neupro patch)] can even things out over a twenty-four hour period. This way, if levodopa wears off, it’s not wearing off to nothing.

Each year, there are more and more longer acting drugs coming out. Sinemet (levodopa) came out in 1967. Rytary is a longer-acting, time-released levodopa. A dosage is released immediately, another in 2 hours, and the last 4 hours later. The aim is to provide a 5-6 hour benefit and more consistency throughout the day. But even with Rytary, there are ups and downs. To determine if you are taking too much or not enough, don’t look at dose. Look at how you feel. And you have to be careful you are treating the right thing. Constipation or a mild urinary track infection, for example, can affect how you feel. Parkinson’s is a slowly progressing disease. A sudden change can mean something else is going on.

Sometimes with Rytary you can mix and match dosages. You don’t always need the same amount of Rytary throughout the day and subtle adjustments may be needed to avoid too much medication. If the dose is too high, you may be dyskinetic but also feel more restless, revved up, or anxious. Think about the times your symptoms are worse and jot them down.

You want dopamine to be as consistent as possible and work toward that consistency. It’s all about drug delivery. The goal of Rytary is to make that drug delivery smoother. Some people find they need more Rytary in the morning, when their dopamine level is lowest. Some need more at night, when they are tired. Physical activity utilizes dopamine. As does stress. For sudden off times, levodopa can be used as a rescue drug. Half a tab of 100 mg Sinemet equals 95 mg Rytary. Inbrija, a new medication that’s been out for two months, is an inhaled levodopa; it kicks-in in about 10 minutes. Abokyn is an injectable rescue medication that’s been around for a while. 

Dr. Rogers cautions that rescue meds be used most often for motor symptoms and more delicately as an answer to stress-related off times. Since Parkinson’s meds also help mental function and reduce anxiety, patients can feel mentally slower or more anxious when the meds start to wear off. If using rescue meds to combat these non-motor symptoms, you could be bringing med doses too close together. It is better to adjust your medication than rely on rescue meds too often. 

Question on pain and Parkinson’s:

Pain can be caused by dystonia, an abnormally tight muscle. This differs from rigidity, a full-blown muscle cramp. In dystonia, your foot may turn down and in from tight calf muscles that don’t release with levodopa. Pain can also be from aging or arthritis. Parkinson’s can cause muscle spasms. If movement loosens the muscles up, it could be from Parkinson’s but also could be arthritis because movement helps both. If medication makes it better, chances are it’s Parkinson’s. Even if Parkinson’s is not the cause, both movement and medication can loosen you up.

Questions on overactive bladder and sleep issues, sleep hygiene, and sleep studies:

Urinary frequency is potentially a symptom of Parkinson’s. The bladder is a muscle; if it stiffens from Parkinson’s, it can’t fill. If it doesn’t respond to levodopa, either the urinary frequency is not caused by Parkinson’s or it is caused by Parkinson’s but doesn’t respond to medication.

Parkinson’s patients have sleep fragmentation; they don’t get into a deep sleep. If you experience an overactive bladder at night, more Parkinson’s medication or a dose of levodopa overnight may be an option. Make sure before you blame Parkinson’s for an overactive bladder or any other symptom that you have your doctor do due diligence to rule out other issues. One of Dr. Rogers’ pet peeves is other specialists blaming symptoms on Parkinson’s, even if the issue is caused by Parkinson’s, but doing nothing to help. There could be treatment options.

Dr. Rogers is a big fan of melatonin supplements. It is the same chemical that is released in the brain and along with the suggestions below, part of good sleep hygiene.

1. Start with 3-5 mg of melatonin taken 10-20 minutes before bedtime. It helps the brain adjust to sleep, telling it that it’s time for bed.
2. Do not read or look at anything on a screen (such as an I-Pad) for 30 minutes before going to sleep. The light activates the brain, telling it that it’s time to wake up. Even if you fall asleep right away, you can wake up in the middle of the night, wide-awake.
3. Get plenty of activity during the day, including getting lots of sunshine and opening the windows to let fresh air into your house.
4. Only use your bedroom for two things (you know what they are!) so the brain doesn’t think of the bedroom for anything stimulating. Read books, look at screens, and watch TV in another room. Train your brain to feel tired and associate sleep with your bedroom.

There is some overlap between sleep apnea and Parkinson’s. Daytime fatigue and tiredness can be a symptom of Parkinson’s; it can also be a symptom of depression. If you are very tired during the day or your partner says you snore or stop breathing for short periods at night, you could have sleep apnea and might want to have a sleep study done.

Another thing that can make you tired during the day is moving all night due to REM behavior disorder, a weird thing that happens in Parkinson’s. During REM (rapid eye movement) or dreaming stage of sleep, your muscles should be essentially paralyzed so that you can’t move. With REM behavior disorder, you move in your sleep. You might flip out of bed or hit your partner. Dr. Rogers had one patient hurt his hand, swinging it up and banging it against the headboard while serving a tennis ball in his dream. First line of treatment is melatonin. If this doesn’t stop movements in your sleep, there are also prescription medications. Sometimes a dose of levodopa late in the day can be the cause.

Questions on Nilotinib and the drug trial being conducted by Dr. Pagan at Georgetown 

Nilotinib is a cancer drug under Phase II clinical trial at Georgetown as a potential new drug treatment for Parkinson’s. Dr. Rogers and Dr. Falconer helped in the first leg of research (Phase I) to see if the drug helped promote the body’s clean-up of alpha-synuclein, which builds up in the brain and makes lewy bodies. In mice, the drug cleaned up alpha-synucleins.

In the Phase I trial, all but one of the twelve patients the drug was tested on had reduced alpha-synucleins. The trial was open label to see what the drug could do and if there were no bad side effects. Trials have to be cautious with the placebo effect, which Parkinson’s is notorious for producing. The Phrase II trial, a double-blind study, has 75 patients enrolled, including a placebo group. Dr. Rogers has still not seen the data and the trial is not complete. He also added that mice have responded well to a lot of drugs that have not worked on humans.

Some of the twelve patients from the Phase I trial have died since its completion. What does that mean? Most were fairly to very advanced in June 2015 when they did the trial. The FDA requires for the Phase II that patients score 2.5 or more on the Unified Parkinson Disease Rating Scale, symptoms be bilateral, with some motor impairment. In the Phase I, the patients had extreme symptoms, two were bed bound, all were fairly end-stage in the disease.

Questions on non-motor symptoms, including ankle swelling, eye tremors, flushing, blood pressure, and the GI track

Parkinson’s can be blamed for almost everything. It can affect every part of the body.

A side effect of a dopamine agonist drug is ankle swelling. There are three of them: pramipexole/Mirapex, ropinirole/Requip, and rotigotine/Neupro patch and they have four main side effects. The first two, which are more common, are drowsiness and light-headedness (which can also occur with levodopa). Rarer side effects are sleep attacks (during the day) and leg swelling. Some Parkinson’s patients get ankle swelling as an autonomic dysfunction due to the body not controlling vascular function. Some people’s bodies don’t regulate body temperature. Flushing can be related to autonomic function affected by Parkinson’s, or could be related to blood flow. Parkinson’s also affects the GI system. Some people get tired or light-headed after eating, when blood rushes to the stomach. Blood pressure is affected by dehydration and often people with low blood pressure don’t drink much water. 

Parkinson’s affects movement and can affect eye movement. Some people can’t focus or have double vision. There are three different nerves that affect the muscles of the eye. If eye muscles are stiff, it can also affect that part of the brain related to eye movement.  Some people get eye tremors, which gives them shaky vision or blurry vision. Everyone is a little different and symptoms can overlap. Damage to the retina, however, is probably not from Parkinson’s. Dr. Rogers likes his patients to see specialists, even if their symptoms are related to Parkinson’s, as he wants the specialists’ input. Neuro ophthalmologists are best to evaluate eye issues. Recommendations are Dr. Osborne at MedStar Georgetown, Dr. Garfinkel at The Retina Group of Washington in Fairfax, and Dr. Egan in Reston.

Dr. Rogers closing advice and encouraging comments:

1. Every patient with Parkinson’s disease has lewy bodies, but lewy body disease is different. Parkinson’s affects the basal ganglia first; eventually only a very small amount of Parkinson’s patients will go on to develop dementia.
2. It’s good to be educated but keep in the back of your mind that just because you read about it doesn’t mean you’ll get it. 
3. EXERCISE! In the last year-and-a-half, three studies have shown that exercise slows progression. There are a number of drugs in either Phase I or Phase II trials to slow or stop progression, but exercise is the only thing we have to-date that has been shown to do so. Exercise produces a runner’s high and the body actually produces dopamine. Exercise releases other endorphins, which improve mood, and release neuroproductive chemicals. Not only is exercise good for your body, it provides better blood flow to the brain so that your brain is healthier too. Although studies have shown the benefits of the stationary bike and something called intense treadmill, Dr. Rogers suggests doing any exercise you enjoy (and will keep doing). Aim for 30 minutes of exercise, three-times-a-week, at an intensity that gets your heart rate up and where you break a sweat. Besides walking and biking, other suggestions are Tai Chi, yoga, boxing classes, or PFNCU exercise classes. Dr. Rogers noted that he’s needed to make very few med changes over the years for his patients who are very active.
4.  DIET! Just eat healthy on the same type of diet you’d eat for heart health. He hasn’t seen any data to support any benefit from the Keto diet, although some people swear by it. Carbidopa blocks levodopa from being absorbed in the stomach. Levodopa needs a protein transporter to the brain, the same transporter that amino acids need. It is better to let levodopa be absorbed without protein in your system. If it upsets your stomach, take with a little bread or crackers. Cream is technically a protein.
5. SUPPLEMENTS! There’s no great data to point to any supplements, but Dr. Roger’s is open to saying that supplements can help Parkinson’s. Supplements are not regulated by the FDA and research is lacking because there’s no money to be made by companies who might fund the studies. Anecdotally (from patient accounts), positive effects have been attributed to CoQ10, turmeric, and CBD/THC, and to a lesser extent Vitamin B supplements. His question is what will they do long-term? CBD is legal in Virginia, so Dr. Rogers can talk about it. His concern with THC is using it with a psychotropic disease than can cause hallucinations or anxiety. THC relaxes some people, but causes more anxiety in others. He cannot officially recommend CBD and questions if there’s a placebo effect (which can last weeks or months), but adds that CBD relaxes people and that’s what some people need.