Neurosciences
This leaflet is to help you understand your medicine. It is not intended to be a comprehensive guide about your medicine and it is not an official manufacturer’s patient information leaflet.
Always consult the manufacturer’s Patient Information Leaflet for the most up to date information regarding levodopa intestinal gel.
Why have I been prescribed levodopa intestinal gel?
In Parkinson’s dopamine is lacking in certain areas of the brain; levodopa is converted to dopamine in the brain. Levodopa is given with a second medicine, called carbidopa, to ensure that more of the levodopa gets to your brain before it is changed to dopamine.
Levodopa is used to help improve some of the motor symptoms of Parkinson’s (slowness and poverty of movement, rigidity and tremor).
Levodopa intestinal gel bypasses the stomach and is delivered directly to the site of absorption, the small intestine. This avoids any problems with delayed stomach emptying and provides steady levodopa levels to give you good ‘on’ time, reducing motor fluctuations and dyskinesia.
How is levodopa intestinal gel given?
The Parkinson’s team may decide to trial this medication using an NJ tube (running from nose to small intestine) to establish how this medication suits you or they may opt to place the PEGJ tube, (tube that crosses the stomach wall from outside to in and then a second tube runs inside from the stomach to the small intestine), in the first instance. To continue this treatment you will need a PEGJ.
Your dose will be carefully adjusted to give you the best ‘on’ time. Your dose will consist of:
- A morning dose
A continuous dose throughout waking hours
A boost dose if needed
Do I need any blood tests?
The Parkinson’s team will monitor routine bloods as part of your follow up. Your Parkinson’s team will continue to monitor your blood pressure.
What unwanted effects of levodopa intestinal gel might I experience?
Since you will have been taking a levodopa preparation for some time now, it is likely that your body is quite used to this, and your Parkinson’s team will have a good idea of how this suits you. Please see the levodopa information sheet for more details of the side effects of levodopa.
The table (below) is a guide to what to do if you get any side effects.
Side effects | How common? | What should I do? |
---|---|---|
Thick scarring around where the tube goes into your stomach | Very common | Our PEG team will keep you under review. Please contact them if you are having problems |
Dyskinesia (wriggly movements). | Common | Contact your Parkinson’s team to review your dosage and, or timings |
Nausea | Common | This should be short lived, contact your Parkinson’s team if it persists |
Pain at surgical site | Common | This should be short lived, contact your Parkinson’s team if it persists |
Infection of surgical site | Common | This should be short lived, contact your Parkinson’s team if it persists |
Tube moves in the gut or gets blocked | Rare | Contact your Parkinson’s team if there is yellowing of skin or whites of eyes |
Sudden onset of sleep | Unknown | Contact your Parkinson’s team or Duodopa nurse if you feel your Duodopa® has become less effective |
Allergic reaction | Unknown | Seek urgent medical attention if there is swelling of the face, mouth or throat |
Dyskinesia (wriggly movements)
Dyskinesia is often a sign that the dosage of levodopa may need review, please contact your Parkinson’s team to review the dose and, or medication timings.
Dose adjustment
Initially your levodopa intestinal gel will be prescribed as an estimate based on your previous Parkinson’s medication. This will then be carefully adjusted during your inpatient stay and afterwards.
Rescue medication
On discharge from hospital you will be provided with a supply of rescue medication, in tablet form, in case of any problems with your levodopa intestinal gel. It is important to take this with you if you go on holiday. Keep a check on the expiry date and make sure you get a further supply from the GP before it goes out of date.
Follow up?
- Parkinson’s team
3 months post discharge, 6 months post discharge, then 6 monthly. - Duodopa® nurses
After discharge from hospital; 1 week, 1 month, 3 months and 6 months. - PEG team
After 6 months and 1 year and as needed, tubes should be replaced every year.
PEGJ care?
Please refer to your PEGJ passport.
Something not right?
- Neurology Ward 34 – 01642 854534 – this is the first point of contact.
- Parkinson’s Advice Line – 01642 854319
Problems with tube or PEGJ site
- Endoscopy – 01642 854845 ask for Laura Simons
Problems with the pump
- Duodopa 24-hour helpline – 0800 458 4410
Visit A&E in an emergency.
Contact us
If you require further information please contact us on:
Telephone: 01642 854319 (Monday, Wednesday and Friday 0900-1100)
Email: [email protected]
Patient experience
South Tees Hospitals NHS Foundation Trust would like your feedback. If you wish to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Department who will advise you on how best to do this.
This service is based at The James Cook University Hospital but also covers the Friarage Hospital in Northallerton, our community hospitals and community health services.
To ensure we meet your communication needs please inform the Patient Experience Department of any special requirements, for example; braille or large print.
T: 01642 835964
E: [email protected]