This topic contains 7 replies, has 1 voice, and was last updated by norma 2 weeks, 1 day ago.
10 July 2019 at 10:40 am #580
Hi to all of the forum members,
I’ve just found this forum after some googling regarding fluphenazine decanoate discontinuation and have caught up on the forum threads.
Firstly to Mr A, I wish your mother a speedy recovery and I’m glad to hear that your local NHS trust agreed to purchase the German version. I would also like to thank you in setting up this forum.
My mother has been on Fluphenazine Decanoate 25mg/1ml since the late 90s and still is.
After coming across various websites regarding the discontinuation and the official Sanofi reply posted on this forum, I enquired with my local GP and my local pharmacy (Boots) – both were unaware that Sanofi had made the announcement.
Currently, my mother is still on fluphenazine decanoate and is still part of her repeat prescriptions. At home, we only have 2 ampules remaining which expire in August 2019 and will be sufficient for her dose in July and August 2019. Recently, I had submitted a repeat prescription to see if the medication is available and Boots were able to order the fluphenazine in as a ‘special request’ which takes 5 working days to come into the store instead of the usual next day delivery.
I then received a call that the medication is ready for collection. When I went to collect the medication the expiry was for August 2019. I then spoke to the pharmacist and the pharmacist mentioned they will try to re-order in mid-August that way all of the old/current stock should have been discarded by then by the supplier.
This was last week so I am waiting until mid-August to see if Boots can order it in and will update you all as well.
I have spoken to other pharmacies in the local area and they are unable to order Fluphenazine Decanote 25mg/1ml but they are able to order Fluphenazine Decanoate 100mg/1ml.
Is anyone else on this forum still able to order them via repeat prescriptions?20 July 2019 at 5:20 pm #590
I am having the same problem as you, my mother has been on Modecate for nearly 40 years, she two is currently on repeat perscription and we have 2 left which will take her up to August 2019, I have tried to order it through my loacal pharmacist and they said I should wait until Mid August to see if I can get new stock. I am going to call around a few more pharmacist in my area to see if they can get it and will keep you informed. Fingers Crossed! I am also going to speak to her consultant about the German version to see if we can move her on that. Mr A if you do have any infomation on it that would be great. I am really concerned as I know this medication works for her and very concerened that she will relapse without it24 July 2019 at 12:12 pm #594
They already stopped production of Modecate last year and our NHS trust pharmacist told us that what stocks are left will expire in October too. So, from what I understand it will be impossible to get hold of Modecate that hasn’t expired anywhere after that and the generic versions are the only alternative (other than different anti-psychotics of course).
I think you already saw what I wrote about getting the German version in the other thread, but in case anyone else wants to see it this is the link: https://modecateforum.org/forums/topic/german-generic-version/
Best of luck! Mr A29 July 2019 at 7:10 am #602
Thanks so much for coming back to Mr A, I have responded to your email, I have one further question that I have asked via email. If you can help me I would really appreciate it. I hope your mother is getting better15 June 2020 at 5:22 am #743
Sadly my mother had suddenly passed away at home the very next day after I started the above thread in the forum. She had passed away from coronary heart disease in the early hours of 11th July 2019.
I was unable to find out if Boots could still provide the Fluphenazine Decanoate 25mg/1ml, I will try to call them today and find out if they can and update you all.7 July 2020 at 1:17 am #762
My sister was on modecate for 50 years. We have struggled to find a replacement over almost two years. She is now on Clozapin which I feel is a chemical restraint in her case and it has destroyed her quality of life. The doctors are saying she has developed dementia. But how does that happen in 3 months.
I am wondering about getting special permission to import modecate into Australia. Mr A, how is your mum’s trial of modecate going? Has she responded?17 July 2020 at 10:43 am #779
Hi Norma, sorry to hear another familiar story. My mum went back on Modecate (generic version from Germany) for about 6 months, but it didn’t help, which seemed odd seeing as it had worked well for 40 years before but I guess other changes had happened to her physiology, possibly as a result of discontinuing the medicine, or ageing, or both, but there seems to be know way to know.
She has now been on Amisulpride (another anti-psychotic which usually has less side effects than Clozapine) for a few months and it does seem to be helping the psychosis, as she complains less of voices now and is generally a more lucid. She’s still a long way from her former self though and suffers from anxiety and confusion, particularly in the mornings.
In older people it appears to be very difficult to distinguish between dementia and schizophrenia as the symptoms can apparently be similar, and I think both conditions can cause (or be caused by) changes in the frontal lobe of the brain. My mum’s psychiatrist ruled out dementia previously in her case as her memory wasn’t getting worse, in fact it improved after discharge from hospital according the the simple memory tests they can do. Apparently with dementia it’s a one way street and memory slowly deteriorates, whereas with schizophrenia this issn’t the case.
My mum also suffers from balance problems and has had some falls, this has been going on a while now and doesn’t seem to be related to any of the recent changes to medicine. It’s the strangest thing as she is physically fit, but sometimes her legs just seem to go to jelly and she stumbles. We’ve ruled out it being related to her blood pressure and wonder if it is related to her anxiety, or happens for some other psychological reason, but no-one has worked it out so far.
I’m not medically trained of course and these are simply my understandings and observations, but I hope they may be of some help. Best of luck with everything!24 July 2020 at 2:24 am #791
Hi Mr A
Has your Mum made any more progress? I’m wondering about amisulpride for my sister??
We are having similar issues with Clozapine but different also.
While on Clopixam injections my sister was still psychotic but it was not too bad. the problem was that she shouted constantly which meant she would have been evicted from her flat because she disturbed the neighbors.
She was then admitted to hospital and came down off Clopilxal to no medication at all. Her psychosis increased of course and she became confused and unable to manage her own clothes/ washing etc. As the new medication – Clozapine – was introduced very slowly she became very sedated (I think chemically restrained) and still is months later. She sleeps most of the time and it’s hard to get her to have a shower. There is also drooling, huge confusion, and very bad constipation. Plus the other side effect, which is problems with the immune system. She had weekly blood tests and heart checks and now is on monthly checks. I would not recommend Clozapine for these reasons but apparently some people do OK on it.
The biggest change is that she has lost her independence – she can no longer get on a bus and do her shopping or whatever else she used to do.
RE YOUR MUM’S FALLS. My sister began having falls after she went on Clozapine. The psychiatrist insists that this is due to what is called Delerium. They link it to Urinary tract and other infections. I’m not sure about this as my sister is asleep a couple of hours after her medication. If she gets out of bed for any reason she needs guiding as she will fall. I personally think this is because she is heavily sedated.
I don’t suppose anyone in Australia knows a good psychiatrist in Canberra or New South Wales who works with older schizophrenics??? The current psych has offered to take my sister off Clozipine but I feel I am between a rock and a hard place because each time we change a medication it takes months in hospital. And who knows what the outcome will be?
As someone who is going through a similar thing, do you think we just have to keep trying til we find something that works? I feel like we both are tired and not sure whether we can do it all again.