Xadago (Safinamide)in UK.

[pen1]

Xadago (Safinamide) is a promising new MAO (B) inhibitor .In the UK NICE approved its use last May. It lasts between 6 and 10 times longer in the body than the other MAOIs used for PD - Azilect (Rasagaline) and Selegeline.

Safinamide is much more complex than either of these other two MAOIs as it also affects sodium and calcium plus glutamate . Research findings suggest that it can benefit, as an adjunct therapy, PwP in mid to late stage, where l-dopa is losing its efficacy and/or they are experiencing severe on/off swings.

MAOIs are very powerful drugs and NICE guidelines stipulate that Safinamide must be prescribed ,and supervised, by a neurologist.

Previous MAOIs must be stopped for 14 days before commencement of Safinamide and it is strongly contra-indicated with SSRI anti-depressants. This combination can lead to serotonergic syndrome which causes uncontrollable changes in blood pressure and can be fatal. It is important that it is titrated up to the appropriate therapeutic dose (between 50 - 100mg pd) under the supervision of a neurologist.

That's the theory. In practice I have had such alarming experiences with it I feel I should alert anyone wanting to try it to make sure they are well informed about all the ins and outs as there seems to be an extraordinary lack of knowledge in the very people we would expect to know most

I was Dx 2003 with Young Onset PD aged 46). I now have severe swings between on/off. I was recommended to ask about taking Xadago by a recently retired PD nurse who said she thought it could benefit me . As a result I now have three boxes of 30 x 50mg Xadago, prescribed by a consultant neurologist specialising in movement disorders at a prestigious teaching hospital who said he knew nothing about it, hadn't heard of it before, and I was the first patient to be prescribed it by his dept. He briefly looked it up, made some ooh ahh noises and then passed me a prescription and told me to read the leaflet in the box and email any questions to him. I did just that - some pretty important questions- but despite follow up call to his secretary and a GP's letter I have never received any answers or acknowledgement. The hospital 'can't' make me a follow up appointment with him as they have 'lost' me on their computer system. Needless to say I still have the tablets - I didn't feel safe starting to take them with no support in place.

I then changed to an excellent GP who was horrified by my experience and referred me immediately to a neurologist at another hospital so that I could safely begin to take Xadago with appropriate support. However, i ended up with a geriatrician who confused Xadago with Entacapone - a COM-T inhibitor (completely different drug type) and told me to take Xadago 5 times a day in place of Entacapone _ whilst still, of course, taking Rasagaline. This could easily have been fatal. When I politely pointed out his confusion he was surprised, looked both drugs up and agreed I 'seemed to be right' and thanked me.

Then he told me that Xadago would not help me anyway and told me I'd be better off exchanging my carefully worked out medication regime for 4 apomorphine injections a day.

Words fail! I am lucky enough to be able to recognise when someone doesn't know what they are talking about and/or fails to provide appropriate medical supervision. But many people don't have the knowledge or are too ill to realise what's going on. I dread to think what happens to them.

I have since met three PD nurses who hadn't heard of Xadago. I just can't get my head round this. How can so called specialists be so ill/un- informed about such an important new drug? Research papers have been appearing like confetti for the last five years . 15 minutes on any 'official' PD site will provide enough information about Xadago/Safinamide to enable anyone, let alone a supposed 'specialist' to have an adequate working knowledge .

There must be so many people in the UK who could benefit from Xadago but are not receiving it and, judging by my experience, there must be quite a few whose health is being endangered by inappropriate guidance from the very people who we trust to know 'what's best' for us. It's a bit worrying!

[Joanne_Joyce]

What an experience, Pen1. I am counting on starting on Xagado when I see my neurologist in August in the USA. I guess part of the problem is that it is such a new drug but it is so important for those of us struggling with motor fluctuations and dyskinesia. I do hope you get the help you need.

[Catlou]

Same here kind of a.it was approved but so new that insurance doesn't cover it yet. Wouldbe very costly.

[suebowdler]

Thank you for sharing this, very useful. My husband (dx 2004 at 59) has also experienced severe on/off periods and drugs such as Pramipexole cause horrendous dyskinesia (to the point where he can hardly walk) and breathing problems. When we read about Safinamide it seemed an ideal option. The neurologist we usually see cannot prescribe if (no idea why not) and we have been referred to another hospital which has a movement disorder clinic. That was 17 weeks ago and needless to say we have heard nothing since, have been told we may not phone to inquire about an appointment and even the GP has been told not to try to chase it up again, not a promising beginning. I am hoping that when (if?) we get to see the next neurologist we will be able to ask about this new drug. I'm afraid my expectations are low, based on previous experience.

It seems that you have to become an expert and be alert for medical practitioners who frankly haven't got a clue. Goodness knows what very ill, very old, ill informed people are fobbed off with, very second rate care I suspect.

NHS is no doubt wonderful in an emergency; for long term patients it is a nightmare and will continue to be so until it is run for the benefit of patients and not the staff. I know there are lovely, caring people doing their best, shame the systems are so inadequate and outmoded.

End of rant.