This topic contains 12 replies, has 1 voice, and was last updated by Sandra Coelho 1 month, 1 week ago.
5 October 2018 at 10:32 am #100
Through a Dutch cousin I have now found a manufacturer in Germany, 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.
More updates on this new lead as soon as I have them…4 April 2019 at 3:19 pm #534
I have now confirmed that Clinigen/Idis can import this German medicine to the UK if requested by a clinician. The price if done privately is likely to be around £50-£100 per 25mg dose, depending on dispensing fees, etc. However, with a bit of encouragement our local NHS trust has agreed to get it imported and pay for it themselves. In our case the deputy chief pharmacist at the trust approved it, but I understand Clinical Commissioning Groups (CCGs) may be able to help too.
Given all this we started my mum back on the original Modecate at 12.5mg doses a couple of months ago and when the last remaining stock expires in November we will switch to the imported German version. She has been phased off Olanzapine completely now and is only on the 3 weekly Modecate depots. She hasn’t really got any better or any worse so far and is relatively stable, but still far from how she was before her relapse. Her consultant has just increased the Modecate dose to 18.75mg and we probably need to wait a couple more months before we can see if it is working.
Begs the question of why didn’t the NHS find this alternative German version in the first place of course. I’m just trying not to think about that for now though and just hoping my mum will get better…30 June 2019 at 3:07 am #576
Philip John Waterhouse
Hello Mr A. Firstly may I offer my sympathies for your mother with regards her relapse after cessation of Modecate Depot. My mother has had a full relapse and breakdown too after being on Modecate for 45 years, and being placed on paliperidone. Almost exactly six months on the new drug she had a full relapse and started exhibiting dementia symptoms akin to alzheimers. I was so pleased to find your forum thread and your subsequent finding of an alternative supplier to Sanofi based in Germany. My mother and I are based in East Lancs and I have written a letter to The NHS Commissioning Support Unit, and I will also pass the information on to my mothers doctor and also her psychatrist. But for a big help, could you please inform which NHS Trust you managed to persuade into obtaining the German Modecate please. That would be a great help. In the mean time I wish your mother a speedy recovery and I hope to the state she was in before her relapse. All the best.8 July 2019 at 4:03 pm #577
Hi Philip, thanks for your kind words and my apologies for the slow reply. Sounds like you’re in a very similar situation. Please email me at email@example.com and I’ll share what information I can. Best wishes, Mr A.10 July 2019 at 2:40 pm #581
Philip John Waterhouse
Hi Mr A, Many thanks for your reply. I have sent you an email as requested. Its from mail.com NOT gmail.com. Check your spam if not in your IN folder. Thanks very much and I look forward to corresponding there. Philip.15 July 2019 at 11:54 pm #584
Philip John Waterhouse
Hi Mr A, Did you get my Email ?…..Hoping you are ok and I’m looking forward to hearing back from you. My mother is still in hospital, and I would like some good news with regards her being placed back on Modecate. Please get in touch ASAP. Hoping the MIB’s have not gotten to you or silenced you in any way.
Philip18 July 2019 at 11:38 pm #588
Philip John Waterhouse
Oh What a great pity, another truth seeker and freedom fighter for ethical and moral justice looks to have been silenced by Big Pharma. All the best Mr A to you and your mother, I hope she gets stabilsed back to her normal self. Your contact would have been a great help.20 July 2019 at 5:03 pm #589
Hi, My mum has been on modecate 25 mg for the last 40 years and we are now not able to get it. she has got two more dosage left of her modecate and then will be moved. I would like to know how I can get a her on the new german version. How do I get her doctor to prescribe this. Any help would really apprecaited as I am concerned she will realpse when she goes on different medication21 July 2019 at 1:48 pm #591
So sorry to hear about your mum, and I wish I had known about the German supplier too before she was taken off Modecate. I have contacted Mr A about this as I would also like the same answer as yours. I am hoping he is going to reply, as my mother is not herself at all, and I am wanting her to return to Modecate if possible. Lets hope that Mr A returns here and messages.
All the best.
Philip22 July 2019 at 8:41 am #592
Thanks Philip, I know the stress that this causes, I am hoping Mr A can come back to us. as when I speak to the consultant I would like to give her as much infomation as possible. I did email Clinigen/Idis ( as mentioned in Mr A’s post) aswell to see if they can give me more infomation. I will let you know what they say.
Sandra24 July 2019 at 12:09 pm #593
H Philip, Sandra, sorry for the delay, but I’ve just replied to you both by email.30 July 2019 at 3:19 pm #603
Here’s a quick overview of how we managed to find the alternative and how our trust agreed to import it:
I originally found the generic Modecate alternative myself and found a company called Clinigen that would be prepared to import is for us. I told my mum’s lead practitioner, who’s a psychiatric nurse from the trust, and also her locum consultant I think. They then spoke to the Mental Health Pharmacist at their trust who investigated it further and spoke to the trust’s deputy chief pharmacist too, and in the end they agreed to import it for us when it becomes necessary.
The trust is the Sussex Partnership NHS Foundation Trust, I’ve been in touch with the Mental Health Pharmacist again this week and she told me they have published a note about it in their “Drugs & Therapeutics Newsletter” this month, it’s available to the public and you can find it here (see page 6 under “Alternative supplier of Modecate® – UPDATE”).
They’ve told me they won’t be using Clinigen to import it in the end, but another company called Mawdsleys, their website is here.
I hope this info may help others who are trying to get help from their trust to supply the generic alternative to Modecate when necessary.4 August 2019 at 12:34 pm #606
Thanks so much Mr. A for the infomation, I will be speaking to my mothers consultant this week,I really hope they will agree to out her on this version as well. Thanks for all your help