Sativex

[Tazmurray]

The above drug is a nasel spray that has been approved by the NHS for MS sufferers, dies anyone know if this is ok to take for Ataxia sufferers as helping symtoms a little is better than nothing, have been waiting since March to see my Nureologist and still no word 😡

[HarryB Administrator]

Dear Tazmurray

Sativex is licensed for people with MS and has to be prescribed by a specialised doctor. It has not been licensed for people with ataxia and is not available over the counter. Neither its safety or efficacy have been measured in patients with ataxia.

I am sorry you have been waiting so long to see your neurologist. If it is a new referral it may be worth contacting your GP to ask how long you will have to wait. If it is a return appointment you could ring the neurologist's secretary to ask when an appointment is likely to be sent out to you.

Best wishes

HarryB

[Tazmurray in reply to HarryB]

Hi Harriet, i have contacted the hospital and i have another year wait to see my neuroligst, i have a list of questions and 2 things going on that is worrying me.....do you think the ataxia UK doctors will help me????? I really am frustrated

[HarryB Administrator in reply to Tazmurray]

Hi

I am sorry to read how frustrated you are.

Ataxia UK does not have any doctors and is unable to give out medical advice. However the Helpline will try to help as much they can if you would like to contact them. The following link from the Ataxia UK website gives more information on the Helpline, including its opening hours and contact details.

ataxia.org.uk/support-servi...

Best wishes

Harriet

[Tazmurray in reply to HarryB]

Thanks 😊

[Stanleyclan]

Nothing seems to be approved for Ataxia.....i just don't think the focus is there.....if its safe for MS hopefully someone is looking at it for Ataxia.....

[Tazmurray in reply to Stanleyclan]

😔

[Tommi_]

I have SCA7/43. I ve been testing for a year now with different CBD-products. As I have understood Sativex is not a CBD product but has both THC and CBD. Anyway, CBD clearly helps me with coordination of the muscles, balance etc. The effect starts after 2-3 days and lasts 2 days. I try to schedule my important "peaks" carefully. Another thing... the dose has to be mild. I use 20% oil or small doses with vaporator. 40% oil is already too strong and big vapo doses do not have the effect at all. This is written by experience of 20-30 try-outs.

[nycgeordie in reply to Tommi_]

Tommi, it would be useful if you could share which CBD product(s) you’re using. I for one would be curious to try.

Thanks

[Tommi_]

Just standard 20% oil has worked outthe best for me. You can find it anywhere.

[wobblybee]

I’m using CBD Oil sublingually for pain relief, I notice is also alleviates stiffness.

But..this improvement may not be the same for everybody

I buy it online..and have built up to my current dose. Paracetamol was recommended by a Specialist Ataxia Nurse, but a regular dose wasn’t helping with pain and I didn’t want to increase it because of constipation.

O.6ml = 60mg CBD

I’m not taking any prescribed medication

[penelope2]

Hi, desperate situations need desperate measures. I feel just sitting back while the medical professionals actually find a medication or something that may help us ataxia sufferers, is not time we have.

As far as i understand it Sativex helps the demyelenation of the central nervous system so will help neurons send messages to each other, which in MS happens. In ataxia the cerebellum, where all the balance, hearing and vision messages are processed, degeneration takes place and so causes problems.

Whether this is the same thing, i am not sure, i don't think so?

Maybe someone on HU can understand it more?

Perhaps this is why MS sufferers get Sativex and other medications? NICE issues guidelines to treat MS which can be very successful. We can only hope that treatments will be available soon

But i am not holding my breath!!!!!!

Onwards and upwards