Hi All. Appealing to all you knowledgeable PD experts please? My husband who is 12 years into PD has been taking Opicapone for 3 years, once a day last thing at night. It has helped enormously, although he has become a little used to it now it’s still worth taking.
When he collected his routine prescription from Boots today the pharmacist informed him the factory has stopped producing it!
Does anyone know of an alternative that works similarly? Anyone else had the same problem? Or any other information about the production of Opicapone?
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Saffron20
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That is not correct information. This is a relatively new highly effective medication that is sold at a premium. The manufacturer's website is still live: ongentys.com/
This US website shows it being available at many pharmacies: goodrx.com/ongentys
thank you for your reply. We are in the UK which may mean the NHS are not prepared to pay for it?! Pharmacists always seem keen to fob you off with any excuse!
Pharma typically reports anything that anyone ever complained about in a phase 3 trial as a potential adverse effect, and you end up with a big long laundry list. The question is which of these cause significant lasting harm. For these the FDA puts up Black Box warnings, but in some cases they are delayed for far too long.
Still, why risk it? Hubby is doing fairly well with Sinemet plus MP. I am inclined to believe that this medication plus Rytary which the doctor prescribed cause confusion in senior PwP.
no idea if any of this is appropriate or available but for what it is worth--
"An alternative to opicapone for treating Parkinson's disease could be entacapone, another COMT inhibitor, or other medications like levodopa, dopamine agonists, istradefylline, or MAO-B inhibitors.
COMT Inhibitors:
Entacapone: Another COMT inhibitor that helps prolong the effect of levodopa by blocking its breakdown, similar to opicapone.
Tolcapone: A COMT inhibitor used in conjunction with levodopa and carbidopa.
Other Medications:
Levodopa:
The most commonly prescribed medication for Parkinson's, often combined with carbidopa to enhance its effectiveness and reduce side effects.
Dopamine Agonists:
Medications like pramipexole and ropinirole mimic dopamine's action in the brain, helping to manage motor symptoms.
Istradefylline (Nourianz):
An adenosine A2A receptor antagonist that modulates neurotransmitter systems, potentially improving motor function when combined with levodopa.
MAO-B Inhibitors:
Medications like selegiline, rasagiline, and safinamide prevent the breakdown of dopamine in the brain, increasing its availability. "
Yes, entacapone is also a COMT inhibitor. It is an older drug and not as well targeted as opicapone - it takes more than 10 times as much to do the same thing. I use it because it is generic and much cheaper.
hi there. Was just prescribed this and also în uk. Collected some from the hospital pharmacy and was put on a repeat prescription by the gp. I am to call my pharmacy to see if ready for collection. I can let you know if they have got it or not.
Any side effects your husband gets from this? And how did it help? Does he take it alongside levodopa? Thanks
I live in the UK. There is no reason for opicapone to go off the market. It is approved by NICE.
The actual information that the pharmacist may have been trying to convey is that they may other generic versions (the current brand may not be available soon at their pharmacy).
Boots is more a large retailer rather than a traditional drug and personal care product producer. They focus on the latter in their retail stores also.
Their retail pharmacy sections employ a lot of students who have a basic degree but may not be having the clinical experience. The actual dispenser is of course fully qualified to do their job but the nice person who hands you your prescription is often just a shop assistant who is still a student
I am about to abroad for a month. But I will try and check this out before I go or definitely when I get back
If you get told this the next time you are getting a prescription let me know and I will investigate this.
I have tried to find an independent pharmacy who is not part of a big chain and if not go to a smaller chain that franchises individual branches.They are more like family businesses and need to retain their customer base.
I live in the U.K. and was refused Opicapone for over a year because of the cost to the NHS. I had to beg based on the research I had done on the effectiveness of it. I have now had it prescribed for the last 8 months and it has been life changing. My On time has gone from 2/3 hours to 6/7 hours, before this I was taking Stalevo which is c/l plus Entacapome which worked quite well but the bad side effect was nausea constantly. Entcapone is the predecessor to Opicapone but you have to take it with every dose of levodopa whereas Opicapone is once daily. I am sure this will not be discontinued so it must be a cost thing in U.K. but no problem to me YET!!
Thank you for your reply. I’m glad it’s been a game changer for you too! My husband has been taking it for a few years so I think it would be devastating for him to stop it now!
It’s definitely sounding more of an NHS cost problem so he might have to beg as you have had to! We do have a very supportive GP so we will take it up with him initially.
Thank you all so much for your help with this. My husband takes Opicapone once daily before he goes to bed. He takes nothing else with it. He was prescribed it about 3 years ago because he was awake all night, couldn’t get out of bed and generally off time during the day. It initially had a fantastic effect and he was so much better with it. It has settled down now and not so effective but he does sleep all night and is generally good during the day. I would hate to see him without the Opicapone! His drug tolerance is quite remarkable and he rarely feels sick with anything new or only for a day or so. He takes quite a cocktail as you can see below.
For members who are watching FOX News: Doctor on Will Chain Show (believe that is the name of the show) talked about Nicotine Patch being a "Cure" for PD and Alzheimer's. They also talked about IBOGAINE (sp?). Guess RFK's war against BIC PHARMA has started!
Hopefully you have heard about parkibot.com the AI PD search tool / website. Here is what parkibot has to say about the drug. My wife is about to move from Entacapone to Ongentys to see if it improves her on and off times. They claim it’s better than Entacapone. We shall see.
Reduction in "Off" Time: The pivotal trials consistently showed that Opicapone 50 mg once daily significantly reduced the average daily "off" time compared to placebo over 14-15 weeks [[1]](pubmed.ncbi.nlm.nih.gov/274... opicapone (Ongentys,on those combinations.), [5], [7], [3]. The reduction was approximately 2 hours more than the reduction seen with placebo [5], [7].
Increase in "On" Time: Correspondingly, patients treated with Opicapone experienced an increase in "on" time without troublesome dyskinesia [3], [8].
Comparison with Entacapone: The BIPARK-1 trial included an active comparator arm using Entacapone (another COMT inhibitor taken with each levodopa dose). Opicapone 50 mg was found to be non-inferior, and potentially showed a greater reduction in "off" time compared to Entacapone [[1]](pubmed.ncbi.nlm.nih.gov/274... opicapone (Ongentys,on those combinations.), [5], [7].
I was prescribed Entacapone once when my neurologist suggested it to me extend the time between doses of C/L. I almost immediately had orthostatic hypotension and a racing heart rate ( up to 180 bpm) while walking. I got a new doctor (movement disorder specialist) who put me on Rytary and had me evaluated for Deep Brain Stimulation. I had DBS surgery in November of ‘24 and switched to Crexont recently. I am almost symptom free and my DBS was one of the first to have adaptive programming switched on March 26th, 2025.
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