Is it worth taking riluzole?

Riluzole will not make you feel better - at best you will feel no different day-to-day. You will never be able to know the exact benefit/difference it made to you. About 10 percent of patients on Riluzole will experience significant gastrointestinal symptoms or lethargy.

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What are the benefits of taking riluzole?

This medication is used to treat a certain type of nerve disease called amyotrophic lateral sclerosis (ALS, also commonly called Lou Gehrig's disease). Riluzole helps to slow down the worsening of this disease and prolong survival.

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How effective is riluzole for MND?

This drug may slow down the progression of the disease and increase survival by several months. However, riluzole is not a cure. It will not reverse damage to motor neurones which have already been affected.

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How much does riluzole prolong life?

Riluzole is the only drug to prolong survival for amyotrophic lateral sclerosis (ALS) and, at a dose of 100 mg, was associated with a 35% reduction in mortality in a clinical trial.

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What are the disadvantages of riluzole?

Side Effects
  • Bladder pain.
  • bloody or cloudy urine.
  • blurred vision.
  • difficult, burning, or painful urination.
  • fast, pounding, or irregular heartbeat or pulse.
  • frequent urge to urinate.
  • general feeling of discomfort or illness.
  • increased cough.

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Riluzole for ALS

39 related questions found

Does riluzole improve quality of life?

Riluzole is not a cure for MND, but in a clinical trial it did show a small effect in prolonging survival. Riluzole will not make you feel better - at best you will feel no different day-to-day.

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Does riluzole increase life expectancy?

In most studies, the reported median survival time for ALS patients is 3–5 years, and riluzole has been found to be effective in improving the prognosis of ALS patients (Mandrioli et al., 2006; Sabatelli et al., 2008; Chiò et al., 2009; Wijesekera et al., 2009; Kiernan et al., 2011; Miller et al., 2012; Lee et al., ...

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What does riluzole do to the brain?

Riluzole is a neuroprotective drug that blocks glutamatergic neurotransmission in the CNS. Riluzole inhibits the release of glutamic acid from cultured neurons, from brain slices, and from corticostriatal neurons in vivo.

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Is ALS treatable if caught early?

There is no treatment to reverse damage to motor neurons or cure ALS. However, treatments can make living with the disease easier.

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What is the longest life after ALS diagnosis?

The average life expectancy after diagnosis is two to five years, but some patients may live for years or even decades. (The famous physicist Stephen Hawking, for example, lived for more than 50 years after he was diagnosed.) There is no known cure to stop or reverse ALS.

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Can you go into remission with MND?

Spontaneous remission of non-symptomatic MND is extremely rare.

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How close are they to finding a cure for MND?

A cure for the genetic forms of MND is close, probably 3 years away, and we are hoping for a cure for the sporadic form (90% of patients) within the decade.”

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Are they close to a cure for motor neurone disease?

There's no cure for motor neurone disease, but treatment can help reduce the impact the symptoms have on your life. You'll be cared for by a team of specialists and a GP.

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When should riluzole be stopped?

If respiratory symptoms develop such as dry cough and/or dyspnoea, chest radiography should be performed, and in case of findings suggestive of interstitial lung disease (e.g. bilateral diffuse lung opacities), riluzole should be discontinued immediately.

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What is the best treatment for motor neuron disease?

Riluzole is the only licensed medication in the UK that's shown a survival benefit for people with MND. Riluzole is thought to slow down the damage to the motor neurone cells by reducing their sensitivity to the nerve transmitter glutamate. In medical research, riluzole extended survival by 2 to 3 months on average.

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What is the latest treatment for MND?

Tofersen is an experimental drug which has been designed specifically for people living with MND with an SOD1 mutation. The results showed that Tofersen was found to slow the progression for these people over a period of 12 months. You can find out more about Tofersen here and read about the results of the study here.

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Does ALS ever go into remission?

It can also be variable within a given patient, with periods where the disease seems to speed up or slow down for a while. Less appreciated is the fact that ALS progression can stop (plateau) or even reverse with significant recovery of lost motor functions.

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How close are we to a cure for ALS?

At present, there is no cure for ALS. However, there are several treatment options, including stem cell therapy, Riluzole, occupational therapy, and gene therapy, which may help manage symptoms and slow the progression of the disease, as well as ongoing research for potential cures and treatments.

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How fast do you deteriorate with ALS?

And, while the average survival time is three years, about 20% of people with ALS live five years, 10% survive 10 years and 5% live 20 years or longer. Progression isn't always a straight line in an individual, either. It's common to have periods lasting weeks to months with very little or no loss of function.

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What stage is riluzole prescribed?

Treatment with riluzole prolonged stage 4 in patients with ALS.

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Does riluzole slow the progression of ALS?

Riluzole, also called Rilutek®, is a medication used to slow the progression of amyotrophic lateral sclerosis (ALS).

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Can you just stop taking riluzole?

In particular, sudden onset of severe nausea or vomiting could be a harbinger of toxicity and in these cases special precautions should be taken. Patients who wish to discontinue riluzole should do so under physician supervision, with careful observation for any cognitive impairment.

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Why do some people with ALS live longer?

People with ALS who use an assisted-breathing device usually have increased life expectancy and may have better quality of life. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in extending survival.

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What is the longevity ALS patients?

Although the mean survival time with ALS is two to five years, some people live five years, 10 years or even longer. Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet.

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Do younger ALS patients live longer?

"We have found that the survival in younger patients is strikingly better and is measured in many years — in some cases more than 10," King's College clinical neurology professor Nigel Leigh said in the article. "Among people in their 50s and 60s, there is a 50% chance of surviving four years or so.

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