This website is completely independent and non-commercial (hence the simple design). I set it up in my spare time for people to share experiences of Modecate users who have changed medication ahead of its discontinuation in 2018. Read more about why I set it up here.
Due to the sensitive nature of mental health issues I don’t feel comfortable using my real name here, or my mum’s real name. So, I’m using an alias: Mr A. If you participate in the forums it’s entirely up to you whether you use your real name or not, and I will not divulge any personal details about anyone. Ever.
I am not a medical professional and I have no medical qualifications. Nor am I able to check the credentials of anyone who posts on this site. This site is not for giving medical advice, let’s leave that to the pros. This site is just to share experiences and give moral support.
Feel free to talk to your medical professionals about anything you read here though and share any thoughts they have. Or, if you are a medical professional feel free to participate here too.
If you want to contact me directly please email: firstname.lastname@example.org.
My mum was on Modecate for 40 years for schizophrenia and was changed to flupentixol by the GP in 2017. She then suffered from headaches and dizziness for around 18 months before it finally became clear she was having a schizophrenia relapse in February 2018. She’d been well for so long that nobody even thought of it until the “positive” symptoms really appeared.
We couldn’t get an appointment with an NHS psychiatrist, despite urgent referral by the GP, so we went private. The private doctor was fairly sure the relapse was due to stopping Modecate and so put her back on it again and we decided we’d worry about it running out later, if/when she stabilised (I’ve done a little research into obtaining it overseas and there’s a forum for that here).
After two more months she was even worse and the NHS took over again and put her on olanzapine instead and then she was admitted to psychiatric hospital. She has been in hospital about 4 months now where they’ve been tweaking olanzapine and diazepam doses, timings, etc. She’s been very up and down and has started to show some signs of improvement, but there’s a long way to go.
Since she hasn’t responded all that well to olanzapine the consultant is toying with the idea of changing her to clozapine. That can have some very nasty side effects though and so we’re not convinced it’s a good idea. I still can’t help thinking that we should try going back to Modecate, but of course that would be pointless if we can’t source a long term supply overseas once it runs out in the UK.
I’d love to hear the experiences of others, please feel free to participate in the forums here.