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
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.
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.
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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...
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.
My Googling showed that is is available and is approved.
Hello Research?
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
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
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
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.
.
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.
Hi all,
Have now got the elusive Opicapone (trade name Ongenty's) from the NHS via my dispensing surgery. Have taken my first tablet (capsule) this evening. Will keep you informed. Let's hope it helps?
Jules77
Best of luck!
S
Opicapone prescribed and started by my wife 3 weeks ago did not go well . After only 4 nights had to stop because of palpitations , sweats and feeling very unwell . She does however have underlying BP issues. Good to see that it is working for some folk!!.
Interestig to read your experiences.
As for me i have taken for2 mths now and found that increases my ON time by 2 hours and improves the quality of the ON time. Just lately iT seems to have blipped so i will post agin when i feel more clear about it .
OPICAPONE has been a good improvemnet so far i.d say and it was prescribed in bHAM by my neuro
though it is hard to get hold of .
Andy / Ojalahey
Hi all,
(Inc researchers and moderators),
Opicapone, an interim report.
I started taking this very new COMPT Inhibitor on Wed 20th Sept (11 capsules so far). It is sold under the trade name of Ongentys.
Prescribed dose, One 50 mg capsule day at tea-time (approx 5 pm).
Opicapone was prescribed by my Consultant for Elderly People, with experience of Idiopathic Parkinson's disease. The rationale for taking this drug being the marked increase in switch - off times I have experienced over the last year. Also my refusal to try Tolcapone because of potential liver damage.
Recorded positive effects:
A definite increase in Parkinson’s switch - on times and a corresponding decrease in Switch - off times. Some evidence that switch - off’s less severe.
Recorded (assumed) side effects:
A definite and quite severe increase in constipation.
Probable increase in severity and frequency of narcoleptic (deep brained) headaches.
Possible increase in level of existing Atrial Arrhythmia and Ectopic heart - beats. Definitely occurring but not fully assigned to Opicapone. Some angina type discomfort?
Increase in propensity to lose control of tongue movement?
A slight increase in dyskinesia?
No observable change in level of painful Dystonia.
An observation:
When I first started taking Madopar, as the dose was gradually increased it seemed as if, to my advantage my creative abilities and abilities to reason, increased. To my disadvantage my anxiety levels increased. This may of course be entirely coincidence but subjectively I don’t think so. As these effects have increased so have my narcoleptic headaches and my fatigue level.
Since taking Opicapone my mind activity and creative ability have again increased but even more significantly, to a point where my mind finds it difficult to shut down, to relax and my anxiety levels have again increased. So the headaches have come more severe. I’m hoping this is merely a transitory and temporary state.
An Aside:
It would seem the more surplus Dopamine cells flood ones brain areas, the more they are looking for something to do? So they spot an area where there is plenty of activity, i.e. The part of the brain that controls, thought processes or mind activities and bashes it, thus causing excessive neural activity, such as creativity, anxiety, addictive behaviour, etc, etc. Hardly scientific but one way for a layperson to look at it.
Regards,
Jules77
Hi Jules77
Thanks for update. Interesting effects and side effects.
My consultant still has not responded to my emails about Opicapone. Assume he can’t prescribe it in my area (Somerset). Will have to try phoning him.
Please keep updating.
S
Hi all, (inc researchers, as this drug is very new).
Opicapone, a brief feedback.
Note: This report is merely my observations. The advantages, disadvantages and side effects may entirely different for others. No claims are made for the drug, merely its effects on me.
See also first my report (above) of 4th Oct.
There is now a reasonable amount of empirical data (over twenty days) to say that although I still have switch-offs most days, there has been a significant reduction in length and severity of switch-offs.*This is clearly to my advantage.
There has been a perceived small decrease in my level of painful Distonia.
*Note: There has been two bad switch-offs in the last week.
Recorded (assumed as possible) side effects:
Slight increase in constipation? No problems after one week.
An increase in severity and frequency of narcoleptic (deep brained) headaches. (A complex issue, that cannot definitevly be assigned to Opicapone).
Slight increase in level of existing Atrial Arrhythmia and Ectopic heart - beats but not fully assigned to Opicapone.
Increase in propensity to lose control of tongue movement?
A slight increase in dyskinesia?
An observation:
When I first started taking Madopar, as the dose was gradually increased it seemed as if, to my advantage my creative abilities and abilities to reason, increased. To my disadvantage my anxiety levels increased slightly. This may of course be entirely coincidence but subjectively I don’t think so. As these effects have increased so have my narcoleptic headaches and my fatigue level.
Since taking first Safinamide, (for me not effective) now Opicapone my mind activity and creative ability have again increased to a point where my mind finds it difficult to shut down, to relax and my anxiety levels have again increased. So the narcoleptic headaches have remained and become more severe. I’m still hoping this is merely a transitory and temporary problem.
I do not take this drug after 6 pm as it affects my ability to sleep.
Because of the potential seriousness of the narcoleptic headaches. I’m considering asking for a scan to rule out other possible causes.(My identical twin brother suffered a massive bleed to the brain 2 1/2 years ago. (Post-mortem concluded Cerebel Amyloid Angiopathy)).
An Aside: (Modification to last report, 4th Oct).
It would seem the more surplus Dopamine floods ones brain areas, i.e. Particularly the part of the brain that controls, thought processes or mind activities and cognitive skills, It seems to create additional neural activity, such as creativity, anxiety, addictive behaviour, etc, etc. Hardly scientific but one way for a layperson to look at it.
Hope this is useful,
Jules77
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Hi all,
Re Opicapone,
Just to add, am experimenting with reducing Madopar, now that it appears more Dopamine is getting to my brain. Is the increase in Narcoleptic headaches due to increased Dopamine? Or is it something else?
seeing GP this morning. Hope he’ll agree to a scan.
Jules77
Hi all,
The 50mg x 1 per day of Opicapone is, I think, working to my advantage. Have managed to cut Madopar 187.5 mg to almost every 4 hours, instead of 3. Switch offs slightly less severe and of shorter duration.
The narcoleptic headaches are a problem as they are quite severe. I use the term narcoleptic, for want of a better description. It’s just like that weird feeling when you have been just given an pre-op anaesthetic. Deep in my brain. I don’t suddenly fall asleep. Sometimes it lasts for 2 or 3 hours and is quite debilitating.
My GP thinks it’s my PD and not likely to be anything else. He suggests I ask my PD specialist about a scan, whom I see in Nov. Just hope it’s not anything serious.
Regards to you all,
Jules77