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Opicapone - anyone had this new COMT type treatment

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OjalaHey
Opicapone - anyone had this new COMT type treatment

OPICAPONE has been introduced into the NHS at the end of last year.

ANybody had any and could offer their impressions of it.

 

Ojala/Andy

 

Kate

My consultant is really keen to prescribe it, but it is istill not approved for PD. So I presume if you are convinced it is worth the money( I do not know how much) you  could ask for a private prescription.   

The same consultant does not reckon much to Numient / Rytary/ Patrome.,. I do not know why he dislikes it, In the end both drugs try to do the same thing:: increase your "on-time". By now, however, there must be a lot more information/side-effects reports, etc on this drug in the USA., where they have had access to it for over a year.

FindAcureNow

I too would like to contact anyone who has been prescribed Opicapone via their consultant - as I have - and what their experience/advice is.

My consultant has advised that two people have been prescribed this drug but was unable to let us know who they were due to confidentiality issues.

I do not belong to Twitter or Facebook but would be grateful for any information that someone may have who has recently started taking this. 

 

anonymous

 

 I am on entacapone.

 It's the first i have heard of this new drug..

which begs the Question... if our Neuro's arn't telling us... then why isn't Parkinsons Uk, then we would All know the choices there are.

Wouldn't Here be the Place to tell us or is that too Simple...

FindAcureNow

I have been on OPICAPONE for over two months now and it has almost doubled my sinemet 'on time' so am now needing to take fewer sinemet tablets.

I no longer have the diarrhoea I experienced with entacapone (that I no longer take), and only have to take one OPICAPONE a day, whereas I was prescribed an entacapone with each sinemet tablet.

The major problem is that I am having to spend a quarter of my pension on the OPICAPONE every month that I find very unfair, as the NHS is saving more than this on no longer supplying the entacapone plus fewer sinemet tablets.

Is anyone else having the same problem?

Fingers crossed that the NHS approves the OPICAPONE as soon as possible.

benji

My Googling showed that is is available and is approved.

 

Hello Research?

Jules77

Hi all,

A very interesting discussion here and an important one, regarding COMT Inhibitors.

I’ve had PD for seven years (diagnosed) and have always been on Madopar, increasing the dose up to my current dose of 5 x 187.5 mg daily plus 2 x 125 mg slow release at night. I have tried most of the agonists with no attributable success and the MAO-B Inhibitors (Rasagiline and Selegiline) again with no measurable help and some significant side effects.

Early on in my Madopar use I was prescribed Entacapone (A COMT Inihibitor) but it didn’t lead to any significant improvement and caused diarrhoea and, I seem to remember, other significant side effects. It was probably prescribed prematurely, as my switch-off times were then relatively short.

As you will know increasing levels of Levodopa (with Madopar, Sinemet or Stalevo) lead to increasing switch-off times. My switch-off times are now much longer than on times. So my Consultant is trying to reduce them. Up until the start of 2017 only Entacapone and Tolcapone were available for the COMT Inhibitor approach. My Consultant wanted to try me on Tolcapone (three times daily). I have refused this because the drug is known to cause liver damage in a significant minority of people and I have a very healthy liver. Liver function tests are recommended every two weeks as an insurance. Also it shouldn't be taken if one suffers with muscle contractions, which I do, at very painful levels.

A new COMT, Opicapone, is now available in most cost areas of the NHS and meets efficy and cost targets. As I understand, it is more effective than Entacapone but not quite as effective as Tolcapone but has none of the potential side effects and potential of liver damage. It is also taken only once a day.

My Consultant has agreed that I can be prescribed the new Opicapone. I hoping to start it very soon. Will report back.

Jules77

TomJP Parkinson's UK

Hi All,

I asked our Research Team for some more information about the treatment, the process behind approval and it's current status and they've just come back to me with the following:

Opicapone is licenced for use in the UK with levodopa only when people have end-of-dose motor fluctuations and when they cannot be stabilised by varying levodopa dose/ when other COMT inhibitors are not effective. NICE guidelines here - https://www.nice.org.uk/advice/es9/chapter/Key-points

We’ve written a blog post about what processes drugs have to go through post-research which you can access here: https://medium.com/parkinsons-uk/you-can-help-us-deliver-new-treatments-d86e704486f0

But basically after licencing and appearing in the guidelines (which opicapone has) the treatment will have to be funded. In England funding decisions are made by local Clinical Commissioning Governors (CCGs). They decide whether the local care providers want, or can afford, to fund new treatments through the NHS. And this means different treatments may be available in different parts of England.

This might explain why this hasn't been made available to everyone, and why some of you might not have heard of it at all. If you have any questions about whether the treatment is suitable/available for you then please speak to your specialists.

Thanks,

Tom

Supa

Hi Jules77

Interesting post about Opicapone.

My neurologist mentioned this in June and I emailed him a few days ago  to find out if my local CQC have now authorised its prescription. Awaiting response. It does seems unfair that it is available in some areas and not others, and this is unrelated to patient need.

Like you I have tried adding various medications to my basic Madopar, and all have had side effects that outweigh any possible benefit,  I too refused Tolcapone because of its effects on the liver. Entacapone  adds only a very small amount of ON time,  and I find it causes late evening indigestion if I take it after about 2 pm.

Look forward to reading about your experience with Opicapone.

Best of luck

S

Jules77

HiTomjp,

Thanks for the information. Very useful

Hi Supa,

Nice to hear from you.

Saw my GP yesterday and he will prescribe as soon after he receives a letter from Consultant. Strange that he had never heard of the drug and had no blurb on it whatsoever. He even asked me how to spell it. This from a top of the class GP.

Looks to me as the NHS are being very restrictive on the prescribing of Opicapone and this is backed up by Tomjp's investigations.

From my understanding Opicapone is only slightly more expensive than Tolcapone and if one takes into the equation the cost of liver function tests every two weeks, it's cheaper. 

So FindACureNow, push for it and I hope you are successful.

will report back after a fortnight or so

Regards,

Jules77.

 

.

 

 

Blossomdeary

My OH has been prescribed this and my dispensing practice said they could not get it; but I got it from the local branch of Boots.

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