People in Scotland living with multiple sclerosis (MS) will now be able to access a cannabis-based medicine after it was approved by the Scottish Medicines Consortium (SMC).
Sativex is the only drug in the UK with a licence to treat muscle stiffness and spasms – also known as spasticity – caused by MS.
It is a mouth spray that is used to treat moderate to severe spasticity in MS when other medicines haven’t worked and contains two chemicals from the cannabis plant called cannabinoids: tetrahydrocannabinol (THC) and cannabidiol (CBD).
Until Monday September 12, Sativex was approved for use on the NHS in England, Wales and Northern Ireland but not in Scotland, although a limited number of people have been able to access it via the Peer Approved Clinical System (PACS) Tier 2 individual patient treatment request process.
Lillias Rapson from Thurso, Caithness was diagnosed with relapsing remitting MS ten years ago after experiencing symptoms since she was 13 and has been using Sativex since 2018.
She said: “It’s a real worry removed from my mind, knowing I can keep my muscle spasms and therefore my pain levels down and under control while maintaining my functionality as much as possible and without using addictive opioids.
“It feels wonderful knowing other people with MS will be able to easily access Sativex on the NHS in Scotland from now on. No one should have to live a life struggling to manage muscle spasms and pain.”
One symptom of MS, called ‘hugs’ can cause those living with the condition to feel pain or tightness around the chest or stomach area.
Ms Rapson added: “I was prescribed Sativex by my neurologist, initially as a four-week trial, to ease muscle spasms. He needed a lot of convincing as he seemed reluctant to prescribe it when it wasn’t approved for use on the NHS in Scotland.
“I’d get MS hugs that were so severe I’d struggle to breathe and be unable to do anything until the pain passed. I’d have to stay close to the bathroom as I’d quite often vomit due to the severity of the pain the muscle spasms caused in my ribs and chest. The hugs would last anything from minutes to hours. I’d also struggle to walk due to tremors in my legs. I’d often nearly pass out from the intensity of the muscle spasms.
“Before Sativex, I tried muscle relaxer Baclofen for over a year with little success. I’d exceed the stated dose but still be experiencing spasms. Then I took gabapentin [used to treat nerve pain] but I struggled with functioning ‘normally’. I felt quite out of it. It was too much with working and maintaining a life also.”
Now, she says she takes eight sprays of Sativex a day and is able to live a life and work out without the severe intensity of MS pain.
She said: “I still experience muscle spasms but they are now mostly controlled using Sativex, along with meditation, breathing exercises and listening to my body, resting when I need to. I’ve not experienced any side effects from taking Sativex.”
The MS Society says that the SMC decision “means more eligible adults in Scotland will be able to benefit from the potentially life-changing effects of the drug.”
There are more than 15,000 people in Scotland living with MS.
Sativex only has a licence to treat spasticity but some people say it also helps with their other MS symptoms, including bladder problems, difficulty sleeping and tremors.
Although there are potential side effects from the drug, such as feeling sick, tired, dizzy, or having diarrhoea, these tend to fade after a few weeks and some people don’t experience them at all.
While a number of drugs already exist to treat spasticity, many people with MS have told the MS Society they find these ineffective and they struggle to tolerate the side effects, which can include memory problems and depression.
Morna Simpkins, director of MS Society Scotland, said: “We welcome the SMC’s decision to approve Sativex for use on the NHS in Scotland.
“MS is relentless, painful and disabling. Sativex has been proven to relieve muscle spasms and their associated pain, leading to increased mobility, better sleep patterns and an improved quality of life for the person living with MS and their family and loved ones.
“We will continue to work with the SMC, NHS Scotland, individual health boards and neurologists to ensure Sativex quickly becomes available to everyone throughout Scotland whose life could be significantly improved by taking it.”
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