Why I set this website up

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.

2 thoughts on “Why I set this website up”

  1. My daughter who is now 53 has suffered from mental illness since the age of 21. Over the years modecate has given her some stability in her everyday life. Every few years she has relapsed for a short while and been hospitalised, but after a short period of time has been able to come home and have a stable life with a caring partner, in the community. In the last year because modecate is no longer available,her life has been severely affected. She was admitted to hospital late last year. After 4 months in hospital she was sent home. Now several months later, she has been readmitted again because of dangerous behaviour. It is heartbreaking for her and for all of us who love her. For goodness sake, can nothing be done to help !

    1. Hi Carol, thanks for posting and sorry to hear of another case of problems caused through the discontinuation of Modecate. I’m still doing research into other possible sources for generic versions of the medicine and will share updates in the Forum pages on this site.

      I’ve also copied and pasted your comments into the relevant discussion here: https://modecateforum.org/forums/topic/relapse/

      My mum was taking Modecate for schizophrenia, was your daughter diagnosed with schizophrenia too?

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