What’s ALS?
Symptoms
Cause: Genetic < Environmental
Diagnosis
Treatment
As a General Practitioner (GP), we cannot prescribe riluzole directly. Here’s the information you need to understand:
What is Riluzole?
Riluzole is a medication primarily used to treat amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND).
It works by slowing the progression of the disease and extending survival or the time before ventilator dependence.
Why GPs Cannot Prescribe Riluzole:
Specialist Medication: Riluzole is a specialist medication that requires careful monitoring and expertise in managing ALS/MND. It must be prescribed by a specialist in neurology or a related field who is experienced in treating this condition.
NICE Guidelines: According to the National Institute for Health and Care Excellence (NICE) guidelines, riluzole should be initiated and supervised by a specialist. GPs do not have the authorization to initiate this medication.
Regular Monitoring: Patients on riluzole require regular blood tests to monitor liver function and ensure the medication is safe and effective. This monitoring is typically managed by a specialist clinic.
What You Can Expect:
Specialist Referral: If you have been diagnosed with ALS/MND, we will refer you to a neurologist or a specialist clinic that can evaluate your suitability for riluzole and initiate treatment if appropriate.
Specialist Care: The specialist will take over your care related to riluzole, including prescribing the medication, conducting regular monitoring, and adjusting the dosage if needed.
GP Support: While we, as your GPs, cannot prescribe riluzole, we remain involved in your overall care. We will collaborate with your specialist, manage other health issues, and provide general support for your condition.
Next Steps:
Referral Process: We will arrange a referral to a neurology specialist or an ALS/MND clinic. You will receive an appointment for an initial consultation where the specialist will discuss treatment options, including riluzole.
Monitoring and Follow-Up: Once under specialist care, you will have regular follow-up appointments to monitor your condition and the effectiveness of riluzole. The specialist will ensure you receive the best possible care tailored to your needs.
Additional Information and Support:
ALS/MND Support Groups: There are support groups and resources available for patients with ALS/MND that can provide additional information, emotional support, and practical advice.
Patient Education: We can provide you with educational materials and resources to help you understand your condition and treatment options better.
Contact Us:
If you have any questions or concerns, please do not hesitate to contact us. We are here to support you throughout your treatment journey.
References:
For more detailed information, please refer to the NICE guidelines on the management of motor neurone disease, which outline the use of riluzole and the importance of specialist care.
“I understand that you’ve recently been
diagnosed with ALS, and that must be a lot to process. I’m here to help you navigate through
this, and Isee you’re interested in riluzole. Let’s discuss that, but first, l’d like to understand a bit more about your diagnosis and how you’re
feeling about everything.”
Could you tell me more about what your
specialist discussed with you when you were
diagnosed? What do you understand about ALS and the treatment options?"
It’s great that you’re being proactive about your treatment. Riluzole is indeed one of the main
medications used ni ALS, and ti can help slow the progression of the disease. However, it’s important to consider a few factors before starting it. Let’s discuss those."
GP: “To ensure riluzole is a safe and effective
option for you, l’d like to ask a few questions about your health. sI that okay?”
“When were you diagnosed with ALS, and who made the diagnosis?”
To confirm the diagnosis and ensure it’s been
made by a neurologist, which is necessary before starting riluzole.
“Have you had any recent blood tests, particularly to check your liver function?”
Riluzole can affect the liver, so baseline liver function tests (LFTs) are essential.
“Do you have any other medical conditions,
such as liver or kidney problems?” Riluzole needs to be used with caution in
patients with hepatic or renal impairment.
“Are you currently taking any other medications,
including over-the-counter or herbal supplements?”
What type of referral is in this case?
RILUZOLE:
40-45 year old man made appointment with some concerns
8 months ago dx. With motor neuron disease
Already told nurses he wants riluzole. He is here to talk about this
Open the BNF before you speak to the patient. Study really quickly
Read side effects of riluzole
Ask about disease how it is and now
What type of treatment
Ask about it (lots of therapies)
How it is helping
Ask about specialist review (he has every three months)
Last time was two weeks ago
Did he speak to specialist about meds?
They said not to use now
Ask did anyone explain why not to use now
He will say sx: slowness in legs, difficulty movement, cannot walk more than 20 mins
Explain: riluzole is only used for one type of motor neuron disease called ALS
Used to improve the symptoms not a cure for the condition
It prolongs the survival
But before we start taking can have serious side effects as well: mainly it can severely affect the liver and can increase chance of developing infections and causes neutropenia
We need to balance the benefits and disadvantages
We cannot prescribe but we share the management and review the meds with the specialist but they need to start
Can you speed up manamaget? We dont think it is necessary
You can discuss with specialist in your next appointment