My mum had a relapse of schizophrenia after being well on Modecate all my life (over 40 years). It’s been horrendous and she’s still in psychiatric hospital now.
I know she’s not the only one going through such an experience and one of my greatest frustrations is that there appears to be no system for the NHS (or other health organisations) to gather information from patients that have been taken off Modecate, but I’m sure this data would be invaluable. I guess not that many people were/are still taking Modecate as it’s an “old” anti-psychotic drug but there must still be a significant and important number of people affected (thousands?)
Therefore, I decided to set up an online forum where people can share experiences of coming off Modecate in the hope that we may see some common trends and, at the very least, support each other a little.
If you or someone you know has experience of Modecate please feel free to join in and participate in the forums here.
Thanks, Mr A
QUICK UPDATE: July 2019
My mum’s been out of hospital for 9 months now and back on Modecate for about 4 months, there have been no real improvements from getting back on the Modecate so far and she still hears voices and has paranoia. However, she was started on a low dose and it is gradually being increased, so we’re still hopeful there is time for it to work, it’s just frustrating that it is so slow and we have to keep being patient. We expect supplies of the original Modecate to run-out/expire in October and then we plan to import a generic German version instead, see this thread.
I haven’t had much time available to post updates and reply to all the messages on here, but will always try to do so, so please bear with me if I’m a little slow responding and best of luck to everyone who finds themselves in a similar situation to my mum and I.
Best wishes, Mr. A.