Safinamide


#1

Sorry It's been so long since my last post, in fact it's been a year. as I'm still trying to get the DBS and drug regime right. I have a question - has anyone heard of or been prescribed Safinamide? It's supposed to be the newest drug out which can reduce dyskinetic episodes and off periods.

Lilac


#2

I have a visit at the doctors tomorrow. I can ask.


#3

Hi Lilac

About 2 months ago I asked my consultant if he thought Safinamide would be helpful to me.

At last I have had a reply. He thinks it would, but the Somerset CCG won't allow it to be prescribed here. They say it does nothing to add to other meds available and is more expensive.

There is a member of the forum named Gus who tried it. Maybe he will be able to help you.

S


#4

Thanks for that GregMus,

Let's see what your GP says!

Lilac


#5

Hi Supa,

Thanks for your reply.

I saw my consultant yesterday, and he said he would prescribe it, but all the reports say it's just the same as Rasagiline.  From what I've read, it's supposed to reduce the 'off' periods without causing Dyskinesia. I just wanted to know if anyone had tried it and if they found it beneficial. 

Lilac

 


#6

If it would e completely the same it would have the same name. There must be something different so it might be worth to try.

 


#7

Hi,

Still waiting to hear if my consultant is allowed to prescribe it. The trial says it is beneficial for reducing off and dyskinetic periods. If this is so why are consultants not allowed to prescribe it and log the results from their patients. It always boils down to money.


#8

hi lilac.                  i have tried safinamide it goes under the name xadago in the uk, it works the same as entacphone but its meant to reduce dyskinesa , i gave it a week came off entacphone went on xadago my on time became reduced so i decided go back on entacphone you know the saying if some thinks working dont try to fix it ! so i  dont think i gave a fair chance i would say if your not on entacphone give it a go, as i remember you start on 50mg once a day then if no benifits go upto 100 mg once a day its meant to be cheaper than entacphone as you only take once aday good luck,have you tried azilect yet really changed my on time and mobility


#9

Thanks Gus, 

Safinamide is a similar drug to Rasagiline (Azilect) which is the reason why some authorities will not approve it for use. My authority I believe has just approved it's use so I hope to try it shortly. I will probably wait until after Christmas now as I am booked on a cruise and it will not be a good time to alter my medication at this stage.

I am already taking Azilect  & Stalevo, which contains Entacapone, Getting the medication right is a trial in itself!

 Lilac


#10
I take azilect and entacphone the entacphone makes your meds last longer thet 4 hr period. Azilect ( rasagiline ) is a one day only tablet i take 4 entacphone one 8am 12 pm 4pm 8pm .the safinamide would replace the entacphone nothing to do with azilect or rasagiline. How you getting along with dbs i might be able to give you some suggestions now nearly 5 yrs ago when mine was done

#11

Sorry Gus, but as Joanne from the digital team said in your post in August, ' Safinamide is in the same drug class as Rasagiline and should not be taken together'. The Safinamide is separate from Entacapone and doesn't replace it.

I've been told the Safinamide helps reduce the off periods and without the horrible dyskinesia, which is what interests me.