Savitex prescription

Hi

I’m enquiring on behalf of my husband who has PPMS, he seems to be getting worse, he can’t walk very much, keeps losing his balance but he’s become much more stiff recently, he has difficulty with dressing himself as he’s so stiff. Is anybody taking Savitex and if so does it help with spasticity. I know in Wales it’s been passed to use since 2014 but I don’t know how easy it is to obtain it. He’s not on any medication, never had any and has been refused Ocrevus. He has cognitive issues also. I would welcome any advice.

Thanks

Hi there,
I live in Wales and was prescribed Sativex a couple of years ago.

So basically the process is that you need to be referred for Sativex by your MS consultant, he or she will refer you to a spasticity consultant, as it is that consultant who decides if you can at first trial it.
If I recall the trial lasts around 6 weeks, after this you if you get a good response the spasticity consultant will write to your GP recommending that you have it added to your usual prescription.
Even though living in Wales it’s free on the NHS, it’s certainly not guaranteed to be given by your GP.
I fact even though the consultant recommended it, at first my GP refused, so I spoke again to the consultant who wrote again to my GP recommending and after that it was available.

If I’m honest, even though it was agreed that I could have Sativex added to my repeat prescriptions, I stopped taking it after around 3 months as I felt it wasn’t doing anything at all, in fact I’d go further and say it was making my walking worse.
I left it off for around another 2 months and then tried again for about 2 months but just like before I felt it was doing nothing, apart from headaches.
When taking Sativex it’s not as simple as popping a pill, the medication comes in a small spray, you need to find the dose that works for you, starting off with one or two sprays each day, building up to a max of fifteen per 24hrs.
You spray it under the tongue or inside the cheek.
I think theres around 96 sprays per bottle, so if you’er spraying the max of 15 per 24hrs it dont last long.

I can still order it on my repeats if I wanted to but I haven’t had it for a long long time.

Even though my MS consultant agreed to refer me to the spasticity consultant to trial it, he basically said at the time that he hadn’t had great feedback from the MS patients that he had already referred, but wanted me to judge it for myself, and like I’ve said after a couple of attempts with it I would now agree with him that its not all its cracked up to be.

Not sure where you are in Wales but my MS consultant is at Morriston Hospital and the spasticity consultant who finally decided was based in Neat Port Talbot hospital.

Another option for spasticity is botox injections, I’ve not tried them but the spasticity consultant who gave me the Sativex said she’s had better results from botox over Sativex and offered me that option if i ever wanted to try it.

It might be worth your husband trying to get a referral to a spasticity consultant anyway, because if you think about, the MS consultant is a neurologist, who diagnoses the MS, but the symptoms of the MS are usually mobility /spasticity problems which are better dealt with by a consultant who deals with spasticity.

i think thats why it has to be a spasticity consultant who asses you for the Sativex.

Hope this helps.

Hi there, thanks for that, it’s just trying anything to make him feel a little bit better and make his life a bit easier. We’re in North Wales, our local hospital is Ysbyty Gwynedd. I’m going to check with the MS nurse to see what she says

At the very least ask for a referral to a spasticity consultant.

Like I said, the neurologists first diagnoses the MS and usually recommends the basic stuff like Baclofen ect to your GP, but ongoing spasticity, especially if its getting worse is better looked by a spasticity consultant.

If your window cleaner diagnoses that your outside tap is leaking, do you get him to try and fix it or do you call a plumber.
Not the same as having MS I know but the principles the same.