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 What We Do

Duodopa® is a treatment for advanced Parkinson's disease offered to patients when various combinations of Parkinson's medications are no longer sufficient to provide a good quality of life. For example, when the many doses of oral levodopa taken by the patient fail to keep them in their best state of mobility for enough of the waking day Duodopa® may be considered.

It can be used for Parkinson's disease in people who are responsive to oral levodopa treatment, but have a substantial amount of "off" time without satisfactory control of severe, disabling motor and non-motor symptoms despite multiple doses of currently available oral medications. This treatment will not improve symptoms that are unresponsive to levodopa.

Duodopa® is a gel mixture of levodopa and carbidopa administered throughout the day with a portable pump into the small intestine via a permanent tube that passes through the abdominal wall, the stomach and into the small intestine (PEG-J). It allows a constant amount of levodopa to be present in the blood, which can reduce motor fluctuations therefore, decreasing the number of times patients alternate between significant "off" time and uncontrolled movement (dyskinesia).

After your assessment at the Duodopa® clinic is complete, your neurology team will:

  • Discuss whether your condition and needs can be helped with Duodopa® therapy
  • Provide a demonstration of the PEG-J, pump, and medication cassette
  • Discuss the risks and benefits of the therapy and answer any questions you may have
  • Depending on your symptoms, you may have to undergo the insertion of a temporary tube through your nose into your small intestine (nasojejunal tube) for a few days to see how you respond to Duodopa® before undergoing permanent therapy
  • If you agree to proceed with Duodopa®, we will seek approval through your insurance (if under 65) or the Ministry of Health and Long-term Exceptional Access Program (if 65 or older)
  • Once we obtain approval (it usually takes about 4 weeks), you will be referred to one of the gastroenterologists

Gastroenterology Evaluation

A few weeks after you are referred to your gastroenterologist, you will meet him or her to:

  • Determine if the percutaneous endoscopic gastrostomy with J extension (PEG-J) insertion is possible
  • Discuss the risks and benefits of the PEG-J procedure
  • Explain the details of the procedure and answer any questions you may have
  • Sign a consent form

Once you have met the gastroenterologist, their office will contact you to schedule:

  • a Pre-Admission Clinic visit to help you prepare for the procedure
  • your PEG-J insertion date

How Duodopa® works

Duodopa® is administered throughout the waking day. The pump is connected in the morning and disconnected in the evening at bedtime. The Duodopa® system consists of 4 parts:

  1. External PEG tube. The tube that leads from the pump through the abdominal wall and into the stomach.
  2. Internal J tube. A tube that is placed within the PEG tube through the stomach and into the small intestine, delivering Duodopa®.
  3. CADD-pump. The pump administers Duodopa® continuously into your small intestine. The continuous and direct administration into the small intestine contributes to providing a more constant amount of drug into your body throughout the day.
  4. Medication cassette. A plastic container that holds the Duodopa® gel. This is connected to the pump and contains the equivalent of 20 tables of 100mg Levodopa (2000mg total) and 25mg Carbidopa (500mg total). The cassette has to be stored in the fridge and should be changed once a day (rarely twice).
Step One

You will have a procedure done by the gastroenterologist to insert a combination of two tubes (PEG-J) through your stomach through the abdominal wall and into the small intestine. This is an outpatient procedure, and you will be discharged the same day. The day after the procedure, you will return to the clinic for evaluation of your PEG-J site.

Step Two

Two-three weeks after PEG-J insertion, Duodopa® therapy will be initiated. The CADD-pump with the medication cassette will be attached to your PEG tube and over three consecutive days for 6-7 hours per day, you will be monitored at the Movement Disorders Clinic by your neurologist and nurse. The medication dosage will be titrated by your specialist team during this time. No hospital admission will be needed for these visits. The goal is to find the dose that gives you the best possible results. Dosing regimens are programmed into the pump on an individual basis.


Duodopa® Requirements

In order to qualify for Duodopa®

  • You must have at least 25% "off" time during the waking day;
  • Used a maximum amount of oral levodopa with good response;
  • Tried other adjunctive Parkinson's medications (entacapone, dopamine agonists, monoamine oxidase-B inhibitors) without sufficient benefit; and
  • Not experiencing uncontrolled psychosis or severe dementia.​

 Your Procedure

How to Prepare

Pre-admission Assessment

You have your pre-admission clinic appointment a few days or weeks before your surgery. This visit takes about 3 to 4 hours in order to obtain blood work, ECG, CXR, a consultation with an anesthetist and the pre-admit nurse will review instructions on how to prepare for the PEG-J procedure.

Please bring the following with you:

  • Your Ontario Health Card
  • All medications you take and their containers.

If you cannot go to your procedure, call the gastroenterologist's office as soon as you know. Their office would have provided you with its contact information at your initial appointment.

Part of planning for PEG-J insertion is making arrangements for someone to:

  • Drive you home from the hospital after the procedure and bring you back to the clinic the next day.
  • Care for you for the first few days after the procedure.

Day Before Your Procedure

Do not eat any food or drink after midnight the night before your procedure. Your stomach must be empty.

Please bring with you a list of your current medications. This includes prescription medications, over-the-counter medications, vitamin or mineral supplements and herbal remedies.

Day of Surgery

Take your Parkinson's medication as usual. They may be taken with sips of water unless your doctor instructs you otherwise.

Your doctor may not want you to take blood thinners or diabetes medications and will discuss this with you at an appointment before your procedure.

Checking In

You will arrive at the Endoscopy Unit on the East Wing (4th floor) at your designated procedure time. Check-in at the reception desk and have the following ready:

  • Health card (OHIP card)
  • Your name, address and birth date

Before the PEG-J Insertion

After check-in, the receptionist will give you a name band to wear. The nurse will help you get ready for surgery. You will be asked to change into a hospital gown and given a locker to keep your valuables.

The nurse will check your blood pressure, pulse, temperature and breathing. They will also put an intravenous (IV) in your arm and administer antibiotics 30 minutes prior to PEG-J insertion. You are taken to the recovery room where you will meet the Anesthetist, who will give your anesthetic and monitor you during your procedure.

During and After the PEG-J Insertion

During the PEG-J Insertion

The procedure takes about 45-60 minutes. You will be taken to the Endoscopy procedure room where you will be greeted by the Gastroenterologist. You will lie flat and be given conscious sedation, a combination of medications to help you relax and remain comfortable.

The Gastroenterologist will:

  • Place an endoscope in the stomach and inflate the stomach with air to locate the appropriate site.
  • Mark the most appropriate site with a surgical pen.
  • Disinfect the abdominal wall around the site.
  • Apply a local anesthetic to the site so that you will not feel pain.
  • Make a small incision (cut) about 1cm at the marked site on your abdomen and pass a PEG tube through the incision.
  • Insert a jejunal extension (J tube) through the PEG tube, and advance the tube to the small intestine.
  • Apply split gauze dressing at the incision site and a clamp to secure the tube in place.
  • Attach the J tube to the PEG tube using supplied connectors.

After PEG-J Insertion

When the procedure is finished, you will go into the Endoscopy Recovery room for 1-3 hours to recover.

  • The nurses in recovery check your blood pressure, pulse, temperature and breathing often, as you wake up. If you have pain or nausea, they will give you medication that will help.
  • You may have an oxygen mask over your mouth and/or nose.
  • There will be a dressing covering the incision on your abdomen. The incision site is often known as a stoma.
  • An abdominal X-ray with contrast injection to J-tube will be performed to confirm the location and placement of the J-tube tip inside.

Discharge Home

You can expect to go home within a few hours after your PEG-J insertion once you have recovered from anesthesia.

Before you leave the hospital, we will:

  • Teach you how to take care of yourself and your stoma
  • Tell you about your follow-up appointments
  • Tell you when Duodopa® medication initiation/titration will take place​

 Recovery

Post-op Day 1

You will return to the Movement Disorders Clinic at the McLaughlin Pavilion (7th floor) the following day after your PEG-J procedure.

During this appointment,​​ you will see the gastroenterologist who inserted the PEG-J and your neurology nurse specialist. We will assess for complications such as pain and bleeding and check your stoma to ensure there are no signs of infections. We will remove the split gauze dressing and apply a Drain-Fix dressing that will stabilize the external portion of the tube and allow for the incision site to heal properly over the next few days. The nurse will also review instructions on proper stoma care and tube management.

Post-op Day 4

Four days after the procedure, a nurse from the Shoppers Specialty Health Network AbbVie Care program will arrange to visit you at your home. The nurse will remove the Drain-Fix dressing and reinforce how to manage your stoma site.

Taking Care at Home After PEG-J Insertion

At home, your medications will remain the same until Duodopa® initiation.

Stoma Site

  • You will leave the stoma site open to air without any dressings unless directed otherwise.
  • There is an external retention plate that should be placed about 1cm away from the site.
  • Keep your stoma site clean and dry. Do not put on creams, lotions or ointments to the area. You may use unscented mild liquid soap to clean.

Hygiene (such as bathing and showering)

  • You can take a shower with mild soap about 2-3 days after your procedure.
  • Do not soak the stoma site in water for the first 4 weeks after your procedure. This means you cannot soak in a bathtub or go swimming.
  • Wash hands prior to cleaning the stoma site.

Signs of Infection

Look at your incisions every day and watch for these signs of infection:

Signs of infection

  • Redness or swelling at your stoma site that is getting worse
  • Excessive discharge that is yellow or green-like from your stoma
  • Bleeding from your stoma
  • Pain at your stoma that does not go away
  • Pungent odor at stoma site
  • Fever, a temperature over 38° Celcius (or 101° Fahrenheit)

What to do

If you notice any of these signs or symptoms, please tell your neurology nurse as soon as possible.

It is important to check mood and behaviour after PEG-J insertion and after Duodopa® titrations. You or your family members need to report any changes to your health care providers.

When to go the Emergency Department After Procedure

If you experience severe pain at the abdominal site, nausea and bleeding from the stoma please proceed to your local emergency department.​

 Titration and Living with Your Duodopa® System

After PEG-J insertion is complete, you will remain on your normal PD medication regimen for the next 2-3 weeks. Once Duodopa® is initiated, it will continuously infuse levodopa/carbidopa gel to the small intestine. This helps relieve your PD symptoms during the daytime. At night, you will continue to take your regular PD medication.

Duodopa® Titration

Titration means determining the Duodopa® dose that controls your PD symptoms with the fewest side effects. Approximately 2-3 weeks after PEG-J insertion, Duodopa® titration will take place.

Titration is completed over a course of three days in the Movement Disorders Clinic until we find the dose giving you the best possible results.

  • Your first titration visit will take 6 to 7 hours. During this visit, we will start Duodopa® in the clinic and assess your response to the programmed dosages.
  • We will customize your dose of Duodopa® based on the medications that you are currently on and program your pump to deliver as such.
  • We will review how to operate the pump and answer any questions you have. We will teach you how to carry out the morning routine of Duodopa® initiation and evening routine of Duodopa® discontinuation.
  • You will go home with the pump at the end of the day and return the following day.
  • You will return for Day 2 and 3 of Titration and we will continue to assess your response to Duodopa®, making adjustments accordingly. Your visit will also range between 6 to 7 hours. You will return on these days already having initiated the Duodopa® infusion independently or by a caregiver.
Stop taking your PD medications at midnight, the night before your titration day 1 appointment, unless you are given other instructions.

Adjusting Your Medications

Your neurology team will decide what PD medications you will remain on once Duodopa® is initiated. You will no longer take oral levodopa during the day and be instructed on how to slowly reduce your other PD medications.

Once you disconnect the pump in the evening, some patients will need to take additional medications during bedtime and overnight. Infusion of Duodopa® overnight can be considered depending on your symptoms.

In terms of Duodopa® adjustments, with the guidance of your neurology team you will be able to make changes to your pump and dosages from home.

Titrating Duodopa® to the right dose takes time. The result will be the best relief of PD with the least side effects.

Follow-up Care

Neurology Team

After titration is complete to the best dosage, you will have a follow-up visit with the neurology team in 1 month and every 4 to 6 months thereafter. Relevant bloodwork will be completed during these visits at TWH.

Gastroenterology Team

You may have follow-up visits with the team if there are any issues related to the tubing and the stoma site.

Interventional Radiology Team

An interventional radiologist may see you if there are complications related to the J-tube. They will be able to replace a blocked or displaced J-tube.

Family Doctor

You can see your family doctor for issues related to the stoma site i.e. infections.

CADD-Legacy® 1400 Pump

Designed specifically for delivery of Duodopa® and is NOT intended for IV or other routes of infusion. There is no known expiration date for the pump. If you are having any problems with your pump, we will supply you with a new one.

Battery

  • Two AA non-rechargeable batteries are used for the pump
  • They usually last about 7 days
  • An alarm will warn when the battery level is too low
  • Getting the pump wet or use of harsh chemicals may damage the pump
  • Do not store the pump for prolonged periods of time with the batteries installed
CAUTION: Do not use rechargeable batteries. They do not provide sufficient power for the pump to operate properly.

PEG-J Replacement

There is no specific timeframe for PEG-J replacement. Typically it is completed on a case-by-case basis and is dependent on its functionality.

How to Dispose of Duodopa®

The regular cassettes can be discarded in your regular household waste container or returned in a red plastic bag supplied by Shopper Specialty Health.

Traveling

Traveling is possible with Duodopa® and will require documentation for proof of therapy. You will need to make sure that you have refrigeration for your medication cassettes at your destination.

Staying Safe with the Duodopa® System

You must follow these rules for your health and safety.

Always carry your Duodopa® Treatment card

  • Before you leave the hospital, you will get a treatment card indicating you are on Duodopa® therapy.
  • You will also receive a foldable card sized poster that provides detailed information about your Duodopa® system.

Tell all your health care providers that you are on Duodopa®

All your health care providers need to know that you have a PEG-J tube specific for Duodopa® infusion so that they can take steps to keep you safe.

NEVER apply water, extreme heat or cold to your CADD Pump

  • Do not expose your pump to water, as this will damage it.
  • Do not expose the pump to extreme heat (above 40°C) and cold (below 2°C) temperatures, as there will be system delivery inaccuracies.

Turn off your pump when having an ECG and MRI

  • This pump may interfere with ECG equipment. Monitor ECG equipment and the patient carefully when using this pump.
  • MRI can be completed safely on a conditional basis. We will provide you with MRI safety information in clinic.
  • Check with your doctor or the manufacturer of your device before having other medical procedures.​
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