A Scot who has been battling the symptoms of multiple sclerosis since childhood is celebrating the approval of a new cannabis drug to ease her pain.
Lillias Rapson, 38, from Thurso, Caithness, was diagnosed with relapsing remitting MS 10 years ago after experiencing symptoms since she was 13.
She was prescribed Sativex in 2018 - the only drug in the UK with a licence to treat the muscle stiffness and spasms caused by MS.
But she was only reluctantly prescribed it as a trial by her neurologist because it was not approved for use in Scotland.
And she feared her prescription would be stopped if the Scottish Medicines Consortium did not approve it.
The drug contains two chemicals from the cannabis plant called cannabinoids: tetrahydrocannabinol (THC) and cannabidiol (CBD). It is used as a mouth spray to treat moderate to severe spasticity in MS when other medicines haven’t worked.
Last night Lillias 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.”
She explained: “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 but I struggled with functioning ‘normally’. I felt quite out of it. It was too much with working and maintaining a life.”
She added: “I take eight sprays of Sativex a day. I’m able to live a life and work out without the severe intensity of MS pain.
“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 cannabis-based medicine was approved by the SMC yesterday for use in Scotland’s NHS for people living with MS.
It had previously been approved for use in England, Wales and Northern Ireland but a limited number of Scots had been able to access it via the Peer Approved Clinical System (PACS) Tier 2 individual patient treatment request process.
More than 15,000 people in Scotland live with MS - the largest number per head of population in the world - and the decision means more eligible adults in will be able to benefit from the potentially life-changing effects of the drug.
Sativex only has a licence to treat spasticity, however, some patients say it also helps with their other MS symptoms, including bladder problems, difficulty sleeping and tremor - uncontrolled shaking of the arm or leg.
Although there are potential side effects from Sativex, 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, patients report 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.”
