Prescribing Advice for GPs

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Fluphenazine decanoate discontinued

The manufacturer of fluphenazine decanoate (Modecate®) injection has written to healthcare professionals advising that this product will be discontinued by the end of 2018.

The letter details unpredictable supplies of the active ingredient from the single global manufacturer as the reason for this decision. It is noted that this decision is not due to any safety concerns. Both injection strengths (25mg/ml and 100mg/ml) are being discontinued with manufacturing ceasing in mid-2018 with supplies in the United Kingdom expected to run out by the end of 2018.

Action: Clinicians should be aware of this product being discontinued. It would be prudent to run clinical system searches to identify any patients who are currently prescribed this product to allow a review and arrangements made to identify a suitable alternative.

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50 Comments to “Fluphenazine decanoate discontinued”

  1. A quick update on my investigation into a alternative supply of Modecate: I had found a manufacturer in the USA that makes a generic version (Fresenius-Kabi) but, although they said they had no plans to discontinue it they refused to confirm if they are making the active ingredient themselves or if it comes from the same source as Modecate. Without knowing for sure I don't want to go to the effort of trying to import it somehow only to find it is discontinued in months as well.

    Through a Dutch cousin I have now found another manufacturer in Germany though, they are called Neuraxpharm and they are also making a generic version called Fluphenazin-neuraxpharm D 25 in German. My lack of German means it's a little hard to communicate with them but it sounds like they are making it themselves, which would mean it is potentially a more reliable source. I'm still trying to confirm this though.

    Germany is a lot closer than the USA of course and falls under the same EU drug regulation as the UK (let's not mention Brexit) and so I'm hoping it might be easier to import from there.

    Neuraxpharm in Germany have suggested I ask a UK pharmacy to import it, but I have no idea if that is possible. I will be speaking to some, but if anyone here has any ideas please let me know.

    @MatthewRobinson - as a pharmacist, do you happen to have any experience of importing medicine from other EU countries?

    I'll keep posting updates on the forums on modecateforum.org too for anyone that is interested.

    Thanks, Mr A

    Comment by Mr A — October 5, 2018 #
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    1. @Mr A,

      It's a long time since I worked in a community pharmacy so things may have changed, but there used to be specialist companies that existed purely to source and import medicines to the UK that were not usually available here. The one I recall was called Idis World Medicine. Obviously the international sourcing and importation comes with a premium price but sometimes it's the only option. Hospital pharmacy departments sometimes do this directly themselves as well I believe.

      Comment by Matthew Robinson — October 6, 2018 #
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      1. Thanks Matthew, I'll try import companies and the hospital pharmacy and we'll see how I get on...!

        Comment by Mr A — October 7, 2018 #
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  2. After years of stability and quality of life our beloved mum has been badly affected by the removal of Modecate from the market. My brother and I are in regular communication with her GP. The second generation medication does not appear as effective and I would welcome any information about the length of time someone would be on medication before a decision is taken that it is ineffective for that individual. What is the most akin to Modecate?

    Comment by KL — September 13, 2018 #
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    1. Hi KL, sorry to hear your mum has been affected too, it sounds like it may be similar to my mum's story.

      I'm not medically qualified and I think your question is really for a consultant psychiatrist, but from what I've been told with my mum, it can take months for anti-psychotics to have their full affect, especially if they have started off on a low dose and are slowly increasing it, which I think is the recommended practice in older patients. This makes the process incredibly slow and frustrating of course.

      In my mum's case they tried her on flupentixol as a 3-weekly depot injection after Modecate and it seems that is considered as "similar", but it didn't work for my mum. Since then she's been on olanzapine (oral tablets). She's been taking them for more than 3 months now and although there has been some improvement she is still very up and down, still hears voices (she has schizophrenia) and it doesn't seem to be helping the psychosis all that much to me, but we're still waiting to see if she improves some more. A lot of patience is needed.

      Please feel free to share your experiences on the forum I set up here: https://modecateforum.org/

      I'm hoping we may see some common trends or, at the very least, support each other a little.

      Best wishes, Mr A.

      Comment by Mr A — September 17, 2018 #
      Reply

  3. Thanks Mr A for setting up the new site. I'd suggest anyone affected provide information to this site. Once the information is collated, I'm not sure of the intended use but I for one am just another person, whose nearest and dearest are being sadly affected by this drug withdrawal.

    Comment by Marcus Leslie — September 13, 2018 #
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    1. You're very welcome. I'll be honest, I'm not quite sure how the information can/will be used, but if we get enough people sharing experiences maybe some sort of lessons can be learned and at the least we can support each other a little. I just felt I had to give it go.

      I've also let my mum's hospital staff know about it, including her consultant psychiatrist. I'm hoping they may be able to let others within NHS mental health services know about it too and maybe it will be useful for someone.

      Need to get more people participating first though, so feel free to share with any NHS mental health staff or patients you may know as well.

      Thanks for your support, it means a lot!

      Comment by Mr A — September 13, 2018 #
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  4. Thanks to those that showed an interest in a Modecate discussion forum. I've now created it and invite everyone to share their experiences here: https://modecateforum.org

    @MatthewRobinson, thanks for allowing me to post here and feel free to share this information any other way you can.

    Comment by Mr A — September 12, 2018 #
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    1. After 46 years of stability and a fairly normal life my father has been taken off the drug, the replacement has failed. He's had to go to hospital today, first time in 46 years. It's a sin to remove a drug which works well from the market with the idea something else can replace it, at 74 he's not up for experiments....very sad...

      Comment by JG — September 15, 2018 #
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      1. Sorry to hear another similar story JG and thanks for posting on my forum https://modecateforum.org/ Wishing you all the best. Mr A.

        Comment by Mr A — September 17, 2018 #
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  5. Are there copy products of Modecate on the market and if so which countries do I get them from?

    Comment by Finn S Pedersen — September 1, 2018 #
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    1. @Finn,

      There may be generic manufacturers or suppliers of fluphenazine but there are none that I am aware of the UK. Other countries may have different arrangements. It would be worth checking with your local medicines suppliers (pharmacies perhaps) so see what they can obtain.

      Comment by Matthew Robinson — September 2, 2018 #
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    2. Hi Finn, if you'd be interested in sharing experiences please subscribe register your interest on the forum I'm planning to launch here: https://modecateforum.org/

      Thanks!

      Comment by Mr A — September 3, 2018 #
      Reply

  6. Please, which injection can replace Modecate injection for mental disorder?

    Comment by Akinwande Toyin — August 30, 2018 #
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    1. @Akinwande,

      There are a few options available here in the UK but options will vary by country and not everything will be suitable for all patients. You would be best off asking a healthcare professional in your local area.

      Comment by Matthew Robinson — September 2, 2018 #
      Reply

    2. Hi Akinwande, if you'd be interested in sharing experiences please subscribe register your interest on the forum I'm planning to launch here: https://modecateforum.org/

      Thanks!

      Comment by Mr A — September 3, 2018 #
      Reply

  7. I plan to launch a forum website where people can share their experiences of Modecate, especially those that have changed medication in preparation for Modecate's discontinuation this year. If you are interested in using such a forum please register your interest now, once I'm sure enough people are interested I'll put the work in to set it up properly, but I'm doing this in my spare time so want to be sure there is enough interest first.

    You can register your interest at https://modecateforum.org/

    Many thanks

    Mr A (modecateforum@gmail.com)

    Comment by Mr A — August 23, 2018 #
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    1. I have two sons on Modecate, this is the only antipsychotic injection that works for them. One son is 33 years old and the other is 20 years old. I am a nervous wreck about the alternatives because none of them worked for them like the Modecate. Now I could be facing both of them being psychotic again.

      Comment by Helen Murray — August 28, 2018 #
      Reply

      1. Hi Helen, if you'd be interested in sharing experiences please subscribe register your interest on the forum I'm planning to launch here: https://modecateforum.org/

        Thanks!

        Comment by Mr A — September 3, 2018 #
        Reply

  8. Finally I've found others that are going through a similar experience to my mum. She 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 when 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 stabilsed (I've done some research into obtaining it overseas).

    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 14 weeks now where they've been fiddling with olanzapine and diazepam doses, etc. She's been very up and down but still hasn't shown any significant signs of improvement.

    One of my greatest frustrations is that there appears to be no way for the NHS to gather information from patients that have been taken off Modecate, I'm sure this data would be invaluable. As the comments here show there must be lots of people affected, I guess not that many people were still taking Modecate as it's an "old" drug but there still must be a significant and important number of people affected (thousands?)

    I've therefore 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. I've only just registered the site and will be doing it in my spare time, so it's not ready yet, but you should be able to register your interest at modecateforum.org in the next 24 hours and hopefully start sharing experiences there by the end of August, once I get it properly up and running.

    If you or anyone you know has experience of discontinuing Modecate please share modecateforum.org with them and ask them to register, the more people that share information the more useful it could be. I'd be delighted if healthcare professionals could contribute too, so feel free to share this with GPs, consultants, pharmacists, etc.

    Many thanks for reading, feel free to reply here while waiting for modecateforum.org to work.

    Mr A

    P.S: Sorry Matthew Robinson if I'm breaking any of your website's rules by posting this information here, but hopefully you'll agree the idea is worthwhile and there is no commercial interest whatsoever.

    Comment by Mr A — August 21, 2018 #
    Reply

    1. @Mr A,

      Your comment on here breaks no rules and is very welcome. It's honestly great to see someone doing something positive when faced with a bad situation rather than posting misguided rants about who is to blame. I wish you well and hope you can collect some useful data that may perhaps persuade a drug company to take up your cause and produce this medicine again.

      Comment by Matthew Robinson — August 21, 2018 #
      Reply

      1. Thanks Matthew, once the site is working I'll post another new comment to let everyone in this thread know.

        Comment by Mr A — August 22, 2018 #
        Reply

      2. Many medicines are now made in Asia and also in China, I'm almost certain had this been made aware in these regions and there was a market for it they'd have started to produce it. Considering the amount of patients worldwide who must be amongst those suffering, many thousands if not more surely, there is a market for this medication.

        Comment by JG — September 15, 2018 #
        Reply

        1. @JG,

          I suspect you may be correct but there is a greater complexity and cost to this than to manufacture. Any facility making medicines for the British market must submit to inspection by the UK regulatory authorities. Further, the medication must be submitted for testing and licensing. These things all take time and money; this investment must be deemed worth it to the manufacturer.

          Comment by Matthew Robinson — September 16, 2018 #
          Reply

  9. My daughter had been on Modecate for years. In June she decided to switch to Depixol, the suggested alternative, before she was forced to. She stopped her fortnightly injections in early June and without starting her new treatment she relapsed in late July, was sectioned and is now in hospital.
    The Ministry of Health should be under a police investigation for it's failure to provide a procedure for safely switching from one medication to another.
    This failure has led to untold suffering and they should be held accountable.

    Comment by John Hobbs — August 6, 2018 #
    Reply

    1. @John,

      I've sad to hear about your daughter's relapse. Do you know why there was a delay in starting the Depixol? Safe transition and choice of the switch product will fall to local mental health services. I wonder why they did not start the new treatment.

      Comment by Matthew Robinson — August 6, 2018 #
      Reply

      1. It is sad but the NHS is above the law.

        I am up to my neck in futile requests for help from them.
        My previously normal grandson 16, non-verbal and severely autistic , can in my opinion, only be helped by the formation of a National Database for Autism and Associated Conditions, designed to split the Autistic Spectrum into subsets which could then be researched and appropriate therapies applied.
        They are desperate not to know and leave parents and families to cope with the horrendous behaviours these people display as they try to relieve the agony they are in.

        Comment by John Hobbs — August 6, 2018 #
        Reply

        1. Hi John, if you'd be interested in sharing experiences please subscribe register your interest on the forum I'm planning to launch here: https://modecateforum.org/

          Thanks!

          Comment by Mr A — September 3, 2018 #
          Reply

  10. I've been on modecate for 43 years and makes me very stable. I have tried amisulpride but after 6 years on that my stomach lining was damaged. I can't believe that they are discontinuing modecate - shame shame shame.

    Comment by Peter Fox — July 31, 2018 #
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  11. My brother is 73 years old he has been on fluphenazine injections for fifty years with no problems now they have stopped them. He's off the planet again and in hospital with a fractured leg after being hit buy a car. I don't think there's a shortage of schizophrenics in this world why stop manufacturing the drug? All I can say is stuff the pharmaceutical company.

    Comment by John — June 20, 2018 #
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    1. @John,

      There are other options, it seems bizarre that his treatment was stopped under medical supervision and nothing was given in place or no plan was made to monitor him.

      Comment by Matthew Robinson — June 20, 2018 #
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  12. I have been on Modecate successfully for more than 3 decades. Could you please recommend a suitable substitute with the same results as Modecate (or is there a possibility that this may come back on the market?)
    I live in South Africa, where this product seems no longer available.
    Would appreciate your advice, thanks.

    Comment by Samantha Mckune — June 13, 2018 #
    Reply

    1. @Samantha,

      There are lots of options, you are best seeking to a doctor locally though as what is available varies by region and some options may not be suitable for you based on your medical history.

      Comment by Matthew Robinson — June 20, 2018 #
      Reply

  13. My mother has recently been taken off modecate injections after being on them for 40 years. Following a violent incident at home she has been hospitalised and may never get home again. She is in her 70s. In my view it is unethical to remove the only effective drug (in our experience) for the treatment of severe Schizophrenia with no replacement having been developed. I have written to the manufacturer Sanofi and suggest you all consider doing the same. I wish each of you all the best in dealing with a terrible situation.

    Comment by Margo — June 11, 2018 #
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    1. @Margo,

      I sympathise with the stressful situation you and your family are in, but it's not really in Sanofi's control. They buy the raw ingredient from a single manufacturer, the only manufacturer in the world, and they cannot guarantee that they will get adequate and timely supplies.

      Although your current situation is far from ideal, it has to be better planning the withdrawal and switch over rather that it going randomly out of supply frequently, something that sounds like it was a significant risk in the future.

      Comment by Matthew Robinson — June 11, 2018 #
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    2. Will Fluphenazine in the tablet form still be available from our drug stores in North America?

      Comment by Long Term Fluphenazine User — July 7, 2018 #
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      1. @Long Term Fluphenazine User,

        From searching the internet it certainly seems to be currently available in tablet from in North America. However, you might get a better answer asking in your usual pharmacy.

        Comment by Matthew Robinson — July 7, 2018 #
        Reply

    3. My mother has been the same. On fluphenazine for 34 years and has kept her really stable. Now they have started reducing it and put her on risperidone and she is still up and down and having hallucinations. She spent 13 weeks in hospital recently her longest ever and still the new medication is not giving her back her quality of life at age of 65. We were told at start of the year they may be able to get it shipped in from Germany but few months later we were told that was not possible. Think I may also write to the manufacturer of this medicine. How can they do this to people who have relied on this medication as no alternatives have worked in the past.

      Comment by Miss Tierney — September 25, 2018 #
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  14. My brother has suffered from schizophrenia for years and his injections were just stopped with no warning, he is now in a hell of a state, I am very worried about him.

    Comment by E Lee — May 15, 2018 #
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    1. My husband has been on modecate since 1982. We are buying it from out of the country.
      But now under mental health we are getting it free for 1 year as this is the only drug along with zyprexa and cogentin and tofranil that keep him stable as no other drugs work.

      Comment by Maureenandjohnmurray2508@gmail.com — June 10, 2018 #
      Reply

      1. I was hoping to speak to you about your experience of sourcing Modecate overseas but your email address doesn't work, if you see his message maybe you could contact me at modecateforum@gmail.com, thanks!

        Comment by Mr A — August 22, 2018 #
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  15. Discontinuing effective mediation for some people is inhumane.

    Comment by Christine — April 15, 2018 #
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    1. @Christine,

      There are alternatives available, some of which are generally considered to be better treatments. As the popularity of a medicine declines, who should be responsible for keeping it available when it becomes economically nonviable to produce for companies that need to make a profit?

      Comment by Matthew Robinson — April 16, 2018 #
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  16. Very irresponsible for discontinuing this.

    Comment by L — April 11, 2018 #
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  17. Absolutely agree with the above!
    Seems like the NHS & drug companies do not fear being old or mental! What goes round comes back round! Playing with lives, getting rid of old vulnerable people to cut costs is so evil. May God bring these people to sense.

    Comment by Justice — November 22, 2017 #
    Reply

    1. @Justice

      While I can't speak for the drug companies having never worked for them, I can speak for the NHS and unfortunately this is beyond our control. We are usually just as frustrated as our patients when an effective drug is removed from the market when there are no safety concerns prompting the withdrawal. Sadly, pharmaceuticals are product of business, and when the business deems that it is no longer commercially viable to make a product there is nothing anyone can do to stop them. No one could stop a car maker from producing a model in it's line up.

      On a more positive note, it does seem that this medication remains, for the time being at least, widely available.

      Comment by Matthew Robinson — November 23, 2017 #
      Reply

  18. My son has been given this medication in a form of injection every two weeks for Schizophrenia. I want to know what other medications that are safe to use beside this fluphenazine. This is outrageous how the pharmaceutical companies are getting richer and the government is allowing this to happen. Something needs to be done.

    Comment by Esther M Denis — November 10, 2017 #
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  19. Why is this product discontinued?

    Comment by Kathy DeLuca — September 22, 2017 #
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  20. God help people with Schizophrenia whom have been on Modecate most of their lives.
    My mother had been on it for over 60 years until a new consultant misdiagnosed her as having full blown dementia around 12 years ago. We since proved the misdiagnosis but they never put her back on the Modecate. The alternatives have not worked for her and her life has been hell ever since. So people beware, (I am not scare mongering here) you so need to be prepared for this. I still think there is so much more to this than the public are being told. I just can't help feeling we are being fed a load of nonsense. Schizophrenia not treated correctly can kill you. All of the alternative medications carry a risk of sudden death printed in the leaflets. In my opinion, this is about thinning the population down to unburden the grossly overloaded NHS, the mentally disabled being the most vulnerable and easiest of targets. I am disgusted to say the least.

    Comment by Alan Anderson — September 21, 2017 #
    Reply

    1. So sorry to hear about your mum. Now I'm going to be facing the same thing. I got the last batch of Modecate but instead of them being in the normal bottles there in tiny little vials with just 50mg in each and no code, so this how they're phasing out.

      Comment by Helen Murray — October 4, 2018 #
      Reply

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