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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.

Update: At the end of 2020 it seems that Modecate Concentrate 100mg/ml is still being manufactured and distributed in the UK.

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122 Comments to “Fluphenazine decanoate discontinued”

  1. In Australia your psychiatrist/doctor can apply to for permission to import a drug under special circumstances. See this link for how to apply.

    https://www.tga.gov.au/form/special-access-scheme#contacts

    I was told by a TGA person that it takes 3 to 5 business days for approval. Then you can ask you pharmacist to get the drug for you.

    The only problem may be cost. I can't find out how much it will cost to import. But if there are enough interested people out there we could make a case to the Health Minister for subsidisation. It was subsidised previously - my sister is a pensioner and was on it for 50 years. She paid $6.50 for a prescription.

    I know that Modecate/fluphenazine/prolixin is available in Germany, Canada and the United States where you can get it from a pharmacy with a prescription.

    Cost may be a problem if it is no longer on the subsidised list but I'm sure with enough people interested the Health Minister could be convinced to reinstate the subsidy.

    My sister who was on Modecate injections for 50 years was paying pension rate of $6.50. She too is in a lot of trouble. It has been over a year since she went of Modecate and other drugs are not working. She is quite ill still.

    Comment by Norma — August 29, 2019 #
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  2. I am 60 and having a lot of trouble since my Modecate was ceased in mid-2017. I found Invega and Abilify have not helped constantly occurring symptoms which are worse than the initial breakthroughs I had in my 20's and am at my wits end. It is badly affecting my spouse who has been a carer for me for all that time. Please are there any further anecdotal stories about drugs that worked after Modecate was withdrawn?

    Comment by B.N — April 29, 2019 #
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    1. @B.N,

      I'm not aware of any success stories as I don't directly working in mental health, however there are other treatment options available that you have not mentioned, for example olanzapine, quetiapine and risperidone. Hopefully one of those is suitable for you and worth discussing with your doctors.

      Comment by Matthew Robinson — May 2, 2019 #
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    2. Prochlorperazine is much like Prolixin (fluphenazine) and may work for you.

      Comment by Michelle — December 24, 2019 #
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  3. My sister has been in hospital in a secure unit since the end of January after stopping Modecate last year. She is a diagnosed schizophrenic and has been on the injection for 30 years. She is now undergoing ECT therapy as no drug has come close to putting her right.
    Please please please can anyone help? Can we buy this drug privately? We are desperate. We have been told that if the ECT doesn't work then she will go in a care home! How can the system fail her like this? There has to be something somebody can do because people are suffering all over the world.

    Comment by Julie Crute — April 24, 2019 #
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  4. I, and many others, found Modecate to be the most suitable anti-psychotic. Every single other alternative has caused me many debilitating side effects to the point where I have become a recluse. They say it is a shortage of ingredient but maybe they were not making any money out of it. In Australia it cost less then $30 for 5 ampoules. One thing I noticed while I've been on Modecate for over 30 years, I never had the flu virus. On the schizophrenia forum website I asked if anyone if they had the flu virus while on Modecate and every single person said no. If I am right in saying this then maybe bringing back Modecate for not only the mentally ill, it could possibly benefit many that are prone to the flu virus. Love and light to the ones that have suffered unnecessarily xxx

    Comment by Kathryn C — March 9, 2019 #
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  5. Will the tablets be discontinued as well?

    Comment by d may — January 20, 2019 #
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    1. @D May,

      The tablets were discontinued a while ago as far as I recall but as still currently available as an unlicensed medicine I think.

      Comment by Matthew Robinson — January 21, 2019 #
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      1. Where would you apply for this? My son is having trouble finding an alternative.

        Comment by Ann — February 6, 2020 #
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        1. You need to see if your doctor is willing to prescribe them. The clinician prescribing accepts a large amount of additional responsibility when issuing an unlicensed medicine.

          Comment by Matthew Robinson — February 7, 2020 #
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  6. My injections of Modecate 17.5 mg finished in October 2018 and I was put on aripiprazole tablets 5mg. This proved too little and I went on to 10mg per day which stabilised me. I now have aripiprazole injections every 28 days with a 5mg tablet if required as a safeguard which I can take if I am feeling anxious. Modecate was a major blanket tranquilizer of the old order, and with this second generation drug I have lots more energy, feel much more creative and instead of sleeping 11 hours a night I can now manage on 9 hours a night. I had been on Modecate for 43 years. Aripiprazole is a really good alternative medicine. It has different side effects but bearable which I think I will get used to. Hope this helps.

    Comment by peter fox — January 11, 2019 #
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    1. I am curious what this ingredients are? I feel a class action lawsuit is in order. The medical field is responsible for these patients quality of care. And it's obvious they aren't advocating for the patient. Only for these new drugs. Seems like they aren't listening and if symptoms aren't remedied and actually made worse by the introduction of these newer meds. I'd say complain write it down and get some malpractice lawyers involved. Our loved ones aren't lab rats and an explanation of changing a medication to a study medication or one that isn't proven to work on a patient is gross negligence. I pray for you all. And especially for our primitive medical system.

      Comment by Dom — January 15, 2019 #
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      1. @Dom,

        Aripiprazole was approved for use in America in 2002 and Europe in 2004 so it is neither unproven nor a study medication, it is an established alternative worthy of consideration after Modecate was withdrawn. I wonder why you feel legal recourse is the way forward? How do you expect healthcare professionals offer a treatment that actually is not available? Do you think it would have been better to keep the product on the market when the company distributing it could not guarantee future supplies that may well have resulted in abrupt cessation of treatment?

        Comment by Matthew Robinson — January 16, 2019 #
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      2. I agree. My Son is really struggling without Prolixin

        Comment by Kim — March 4, 2019 #
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        1. I believe that it is only the injectable version of Prolixin, that is being discontinued?

          Comment by K — April 5, 2019 #
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          1. @K,

            Not true here in the UK - the tablets were discontinued long ago here.

            Comment by Matthew Robinson — April 5, 2019 #

      3. With the discontinuation of Modecate many many people around the world have suffered debilitating side effects of other antipsychotic that has not only affected them enormously but their family and loved ones have suffered to. I and many believe a class action should be in order and the Pharmaceutical company should be responsible for previous Modecate users quality of life being destroyed. Not only that, lives have also been lost due to I feel a web of deceit and lies of a company over profit not people. Love and light to all xxx

        Comment by Kathryn C — June 20, 2019 #
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      4. Very well said. My daughter was prescribed Prolixin after intermuscular injections, 25mg daily for weeks. Along with that also Haldol 10mgs injections which she is allergic to. She came home and is incompetent, drools excessively and has tremors. I dress spoon feed her and bathe her etc. I want to sue, they disabled her and interrupted my life with her full term care.

        Comment by Kathy — December 14, 2019 #
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    2. I have been on modecate and within 2 days all the delusions and paranoia and the mania disappeared. After 2 years without the modecate the illness has resurfaced. I have just now read Aripiprazole is ok, so I shall try. Perry N.Z.

      Comment by Perry.Carroll — June 9, 2019 #
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    3. I finished Modecate in October 2018 and was put on aripiprazole. After 8 months I was on a verge of a nervous breakdown, very anxious and paranoid - relationships at work breaking down and small things right out of proportion. I went back onto a drug that I was on for 6 years - amisulpride and within a week I was much more relaxed and lost the paranoia. With aripiprazole I was having nightmares for over 2 months and always thinking I was dying. Based on my experience I cannot recommend this drug at all.

      Comment by peter fox — June 23, 2019 #
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  7. I have been on Modecate for 43 years it has kept me reasonably stable. I worked for an electronics firm for many years. I am now 61 and the Doctors put me on Aripiprazole tablets at the maximum therapeutic dose in February. Then they reduced the Modecate gradually and discontinued it totally in July-August. Unfortunately I relapsed by October after a heart problem. Currently I am suffering delusions and under community supervision. Some of my benefits have ceased and I get little support from care workers. I now face the real prospect of long term hospitalisation, I have requested an appointment with my local MP to see if he can help me. I feel terrified at what my future prospects is, mental institutionalisation. Why are we not told about how and why this crime is permitted? We, as mentally I'll people, should have the right to be kept informed of what is going on?

    Comment by Chris McElroy — November 29, 2018 #
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    1. @Chris,

      You need to discuss your treatment and concerns with your GP and a mental health specialist, as well as your MP. Hopefully a more effective treatment can be found for you.

      A lot of comments on this thread are asking to be kept more informed but I really don't understand why you would willingly surrender your privacy and allow drug companies and government agencies access to your full medical records - something that would be necessary in order to communicate directly with each user of a particular medicine.

      Comment by Matthew Robinson — November 29, 2018 #
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  8. I feel both very sad and relieved to have found this forum.
    My 87 year old mother was on modecate for 34 years and extremely stable with it, leading a happy, productive life despite her Schizophrenia.
    Then without notice, as we were visiting her GP for the next injection, we were advised that modecate was being discontinued and it was unavailable. In desperation, we tried several pharmacies and hospitals for stock but sadly nobody thought there was a need to keep a stock in their 'pantry'. We were also advised that modecate made elsewhere was not produced to the same standard, therefore there was no guarantee it would suit my mother's needs. That was late last year and we have been seeing a consultant psychiatrist ever since trying to stabilise her on Olanzapine (oral tablets).
    Being old and frail she has been started on low doses 5mg, then 7.5mg but without success. My mum is a paranoid schizophrenic with fixed delusions and where she was happy and stable, her head is now continually swimming with delusions and she is frightened. Up until they withdrew the modecate she was happily living on her own. Now I fear she will not be able to stay in her beloved home and that she may end up in hospital if she cannot be stabilised. Her psychiatrist is going to try 15mg next, as in her opinion if 15mg doesn't keep a cap on the delusions then Olanzapine is not for my mum. Although, the psychiatrist is also considering trying Olanzapine in depot form if the 15mg oral dose doesn't work.
    I believe this was a very irresponsible way to withdraw such an important drug that obviously kept a very good cap on a variety of chemical imbalances for the mentally ill. We had no warning, no time to investigate, we were forced to react quickly to a desperate situation and are living with the consequences.
    How can someone make such a drastic decision without the input of the people most affected? These people happen to be one of the most vulnerable elements of society and they will be and are suffering the consequences everyday. Not to mention the emotional upheaval for all concerned in their lives.
    It takes an enormous effort to get to the point of finding the right chemical cocktail for the sufferers of these illnesses and it should not be undone without a transitional path that has been thoroughly researched and discussed with some focus groups around the world. Simply stating there are alternative drugs is unacceptable given this a a game of chemical chess with many possible casualties along the way.
    I've been my mother's carer for 48 years and I can honestly say that her current state is as devastating and heartbreaking as the day she was diagnosed. I fear we're losing her again.
    Is any research being done as a result of this forum? Can data be provided to help companies produce a modecate equivalent?
    Matthew, my experience with this family of drugs from a doctors perspective is that they seem to focus on the side effects more than the stability for the patient e.g. my mum has developed a parkinson's like tremor in one of her hands as modecate can affect the nervous system of some patients. However the tremor has not stopped her using her hand and she feels great when she feels she is participating in life just like everyone else - that's worth more than words can say. I think it's only on the decline because some doctors consider it 'old' medicine, yet for my mum it was the chemical answer to a happier life and that seems to be evident for many people here.

    Comment by Tina Bowen — November 5, 2018 #
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    1. @Tina,

      I have the greatest sympathy for your situation and that of all patients affected by this product being discontinued. Your comment however raises a few interesting points.

      There are other medicines that are available that are considered to be alternatives, but there is no one size fits all solution and you should never take the word of a website over that of a healthcare professional who has complete access to your medical records. No amount of research will ever identify a direct equivalent suitable for all patients.

      This post was published in Summer 2017 so the company that manufactures and distributes in the UK gave plenty of notice and clearly state it is due to unpredictable supply of the active ingredient. They have tried to pass this information to healthcare professionals but unfortunately we are all so busy we will often miss these letters. That said, would you really want a pharmaceutical company contact you or your relatives directly? (Even if it were legal in the UK, which currently it is not).

      Comment by Matthew Robinson — November 5, 2018 #
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      1. Hi Matthew,
        I'm in Australia so can only comment on the notice period given here. As you say, I can imagine that it may have been overlooked by the medical practitioner initially given how busy they are, but we only found out when we turned up for our appointment and there were no stocks available anywhere we tried.
        I certainly understand there is no one size fits all which is why we've been working closely with my mum's GP and consultant psychiatrist to find a suitable alternative. Modecate just happened to be the only medication that provided a very good degree of chemical balance for my mum in our experience.
        My comments regarding research leading up to this decision being made were genuine i.e. were health care professionals consulted at all? was there a forum between the supplier(s) of the drug and health care providers discussing the possible ramifications to patients?

        Comment by Tina Bowen — November 6, 2018 #
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        1. Hi Tina

          Sorry to hear another familiar story, my mum has been through a a similar experience. If you have time I invite you to visit the website I set up and feel free to copy and paste your comments from above in the forum there too, the address is modecateforum.org

          My mum has finally left hospital after more then 6 months and is in a nursing home now for respite. We're hoping she will recover enough to return home with my dad again, although he is now suffering from anxiety and heart problems as a result of my mum's relapse. She is also now on Olanzapine which seems to be helping finally, but nowhere near as well as the Modecate did for 40+ years.

          I'm now in touch with a couple of publications that may be interested in publishing stories about this whole discontinuation saga, so am keen to be in touch with many people with experiences to share as possible.

          Best of luck to you and your mum!

          Mr A

          Comment by Mr A — November 9, 2018 #
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          1. Thanks Mr A. I certainly hope your mum & dad recover. I will look at the other forum you've suggested.
            Best wishes
            Tina

            Comment by Tina Bowen — November 20, 2018 #

    2. Hi Tina,
      My mum has been on modecate depot injections for 50 years. This has kept her mentally well for most of her life. In the past other 'medications' have been tried and failed. I only found out yesterday that modecate was being withdrawn and now I feel so stressed as I know only too well the consequence of her not receiving this drug to control her paranoid schizophrenia. My mum has lived with me for the past 23 years and I am her main carer. She has had this condition for over 65 years. Only families that have experienced this condition will know the nightmare of a relapse. I need to find out if I can buy this drug from another country and how I would go about it. Janet

      Comment by Janet Hall — February 12, 2019 #
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  9. I keep hearing about alternatives, alternative means something that can replace, however if other medications do not work, they cannot be called an alternative.
    To take away critical medication that works for ill people is a modern day crime, someone should be held to account!
    If the raw ingredients are readily available, then there is no reason why this drug should be discontinued. My thoughts is the Process Plant has become old and the owners don't want to invest high capital to upgrade etc

    Comment by JG — November 4, 2018 #
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    1. @JG,

      The original communication from the manufacturer pointed directly to unpredictable supply of the active ingredient as the reason for the decision. Often these letters give 'commercial reasons' as the basis for the decision but this letter was notable for being much more specific about the active ingredient.

      Comment by Matthew Robinson — November 5, 2018 #
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      1. I've spoken to the manufacturer of the active ingredient in South Africa (Fine Chemicals) directly and they tell me they continue to make the active ingredient and supply it to others and have no plans to stop. Of course, I don't know if they told me the truth and the supplier of Modecate may still have had problems with the reliability of supply for all sorts of other reasons that I won't even begin to speculate about.

        I have found another manufacturer of a generic version of Modeate in Germany and also in the USA and have been reliably told that they source the active ingredient from a different supply chain. So I do believe there are alternative manufacturers of the same medicine that don't have plans to discontinue. I'll continue to post news on my website modecateforum.org as I have it.

        Comment by Mr A — November 9, 2018 #
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  10. I would like to contribute to this forum. I have a 53 year old daughter in New Zealand who is suffering a dreadful relapse because of the withdrawal of Modecate injections. She has been admitted to hospital off and on for most of this year. None of the alternatives seem to help her at all.

    Comment by Carol graham — October 19, 2018 #
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