Parkinson's Disease: medications and paying cash

Overview

Parkinson’s disease is a disorder of the nervous system that affects movement and gets worse over time. It develops as the brain cells that make dopamine, in an area called the substantia nigra, weaken and die. Tremor, stiff and tight muscles, slowness of movement and balance problems are the main signs, often beginning on one side; constipation, sleep problems, depression, anxiety and changes in thinking and memory are common as well. There is no cure, but medicines and, for some people, deep brain stimulation ease the symptoms.

Levodopa is the main treatment: the brain turns it into dopamine, and it is combined with carbidopa, which stops it being broken down before it gets there. Dopamine agonists such as pramipexole and ropinirole act on dopamine receptors directly and are used alone early on or alongside levodopa. MAO-B inhibitors (rasagiline, selegiline and safinamide) and COMT inhibitors (entacapone and opicapone) slow the breakdown of dopamine or levodopa; rasagiline can be used alone, and the rest, like istradefylline, are added when a dose wears off before the next is due. Amantadine helps tremor, stiffness and the involuntary movements that levodopa can cause, and the anticholinergic benztropine helps tremor, though it can cause confusion and memory problems.

Four rules come from the labels. Carbidopa-levodopa is taken at regular intervals on the schedule the prescriber sets, and the prescriber is told if meals seem to blunt a dose: high-protein foods can delay its absorption, iron supplements can reduce it, and it can lower vitamin B6, which is checked. A Parkinson’s medicine is not stopped or sharply cut back without the prescriber: most of the labels warn of high fever, rigid muscles and confusion after sudden withdrawal, and several of them, including the extended-release levodopa capsules, the dopamine agonists, Gocovri (long-acting amantadine) and safinamide, call for a gradual taper, while the regular carbidopa-levodopa tablet label asks that patients be watched closely. Levodopa, the dopamine agonists and most of the add-ons can cause sudden sleep without warning, including while driving, hallucinations, and urges to gamble, spend, eat or have sex that people may not recognize as a problem, so families are asked to watch for them and tell the prescriber. And nonselective MAO inhibitors must never be combined with levodopa, while rasagiline, safinamide and Zelapar (selegiline dissolving tablets) must not be taken with other MAO inhibitors or meperidine, and plain selegiline must not be taken with meperidine; the rasagiline, safinamide and Zelapar labels also warn against or rule out tramadol, methadone, dextromethorphan (in many cough medicines), St. John’s wort, cyclobenzaprine and many antidepressants, and the plain selegiline labels advise avoiding tricyclic and SSRI antidepressants, so tell every prescriber and pharmacist you take an MAO inhibitor.

Choosing between the options when you pay cash

Carbidopa-levodopa tablets in regular, dissolving and extended-release forms, pramipexole, ropinirole, rasagiline, selegiline, entacapone, immediate-release amantadine and benztropine are available as generics; Mirapex, Requip and Cogentin are discontinued, so those fills are always generic. Quotes for the same generic prescription can differ between pharmacies, and because levodopa and entacapone are taken several times a day the monthly count is large; compare quotes on the exact form, strength and quantity. Rytary and Crexont (extended-release levodopa capsules), Dhivy (a scored carbidopa-levodopa tablet), Gocovri (long-acting amantadine), Zelapar (a selegiline tablet that dissolves on the tongue), Ongentys (opicapone) and Nourianz (istradefylline) are brand products; Rytary’s only generic is an authorized generic, and the Orange Book lists approved generics rated to Xadago (safinamide) that may not yet be sold, so ask whether a quote is for the brand or a generic.

Forms are not interchangeable at the counter. Less levodopa is absorbed from extended-release tablets, and Rytary and Crexont are converted from regular tablets with dosing tables rather than milligram for milligram, so a move from tablets to either capsule, or between the two capsules, takes a new prescription; extended-release pramipexole and ropinirole are separate products from the plain tablets, and Gocovri cannot be substituted for ordinary amantadine. If a long-acting or combination product is quoted high, ask the prescriber whether the plain tablets would suit you, or, if you take the three-drug carbidopa, levodopa and entacapone tablet, whether entacapone and carbidopa-levodopa as two generics could replace it. Not every pharmacy keeps every strength, the dissolving tablets or the small agonist strengths used while a dose is built up, so confirm stock before the prescription is sent, and once the dose is settled ask for a ninety-day supply. None is a federally controlled substance, so refills and transfers follow the ordinary rules.

Medicines at a glance

How the medicines in this group are supplied and usually taken. Each guide has the full details.

• Carbidopa/Levodopa
  Tablets (generic and Sinemet), Orally disintegrating tablets, Extended-release tablets
  Generic: Yes · Three or four times a day
• Pramipexole
  Tablets (immediate release), Extended-release tablets
  Generic: Yes · Three times a day
• Ropinirole
  Immediate-release tablets, Extended-release tablets
  Generic: Yes · Three times a day
• Rasagiline
  Tablets
  Generic: Yes · Once a day
• Selegiline
  Capsules, Tablets, Orally disintegrating tablets (Zelapar)
  Generic: Yes · Once a day
• Entacapone
  Film-coated tablets, Combination tablets with carbidopa and levodopa
  Generic: Yes · See the guide
• Amantadine
  Tablets, Capsules, Oral solution
  Generic: Yes · Once or twice a day
• Benztropine
  Tablets, Injection (given by a health professional)
  Generic: Yes · Once a day
• Cabergoline
  Tablets
  Generic: Yes · Twice a week

Medications

Which of these is right for a given person is a decision for the prescriber. The guides explain what each drug is, how it is supplied, and why its cash price varies between pharmacies. No page on this site shows a price; prices come from pharmacies responding to your actual prescription.

Questions worth asking

• Which of my medicines does the main work, and what does each add-on do?
• How should I time carbidopa-levodopa around meals, protein and iron?
• Is the plain tablet acceptable instead of the extended-release form?
• Which cough, cold, pain or antidepressant medicines are unsafe with my MAO-B inhibitor?
• What should my family watch for and tell you about, and how is a medicine stopped safely?

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