Hi
My consultant prescribed opickapone for me and i had a phone call from my GPS surgery to say they wouldn’t issue the prescription as the medication is too expensive.
I was told by the PN that my GP wouldn’t prescribe opicapone unless I had tried entacapone first because of the cost. So I started on entacapone, which didn’t work for me and then switched to opicapone. Maybe you could suggest this?
My husband was prescribed opicapone by the pd nurse. Gp issued it without any comment. For him, so far, it has been increasing on time very well. Never a straight line with any of the drugs of course but time will tell. He is still on first prescription. We had a previous bad experience with STANEK, which has entacapone within it, though I don’t think the nurses even remember that.
Sorry to hear that your GP is being difficult. Until this is resolved, you might wish to consider Mucuna Puriens. There are plenty of reviews suggesting that this herbal supplement can be very helpful in relieving the symptoms of Parkinson’s. I have bought some from british-supplements.net. I find them quite effective, but best to take them with or just after food to avoid the possibility of nausea. Hope this helps.
Update: I’ve changed to a different Gp practice and have been using entacapone which hasn’t worked and have an app with my consultant tomorrow so hopefully I’ll be able to get the original medication but am now struggling with swollen legs and hands due to the ropinerole i take. Parkinsons is like the gift that keeps on giving!! I try to stay positive but some days just want to give up
Hi E_m_tumelty,
I know exactly how you feel, but please don’t give up.
Have you, consulted a neurologist?
GP, are exactly that, General Practitioners, their knowledge of PD, and the best medication therefore is usually very limited.
It is more of a “hit and miss” situation.
I honestly would not suggest any herbal medication until you have spoken to your neuro.
It may be useful, however it may also be contra indicated for whatever medication he/she puts you on.
Again, please don’t give up.
Remember we are all here for you.
There’s a lot that I don’t understand but I thought that all areas had to have a formulary listing treatments and drugs used in that area. I have heard locally of somebody who has not been given opicapone by their GP while somebody who lives near to them has been prescribed it by another GP.
Surely decisions should be consistent at least across local areas and ideally across the NHS.
This sounds like something Parkinson’s UK should be able to provide more information on?
Good luck and I hope it works out for you this time. Parkinson’s is rotten enough without having to battle for support and adequate treatment. Jx
Hi E_m_tumelty
If your Consultant has prescribed you opickapone then that is what you should have. I have had problems like this. I was having Sinemet brand for a few years then found on a prescription that it had been changed at the GP to a generic. I took it for a couple of months and it didn’t work. I had an appointment with my Nurse and he filled out a form requesting that I be put back on the brand Sinemet. Took form to GP and then was given a prescription with Sinemet. My Nurse said he had never seen me like I was then. You are entitled to have the med that your Consultant says and also which is good and works for you. What is annoying is that my GP surgery at the time did not even say they had changed it. The Pharmacy can only give you what is on the prescription. At my Surgery they have a Pharmacist who is always trying to get you to have a cheaper med. While I agree that we should try and save the NHS money there are better ways to do it. A lot of medicines are wasted because we have tried meds that have been changed and they don’t work, also if you take your medication from the shop assistant over the counter you cannot give them it back if they have given you something different or it is wrong. Anyway I hope you get the medication you want.
Best wishes Sharon