I have been on this drug i.e. Motival for 27 and a half ...

Hi Tracey,

The doctors here in Spain are vey good and in my opinion much more caring than in UK. There is a website called ddlg.co.uk, it stands for the Disabled Data Ling Group and you can ask them anything you want. You have to register but it costs nothing. If you look down the questions and answers you will see a few from me regarding Motival withdrawal. You can ask them about your concerns regarding Moditem and they will answer you in 24hrs. With regards to the Xanax its OK and works like Valium. It helps with the anxiety in that it makes you drowsy and go to sleep. I think Ill only take one when the going gets really bad or my husband starts getting romantic. I stopped taking Motival 1 week ago and am having all the symptoms you are having and I know they are horrible but like all withdrawal symptons they will come an end. The only positive thing to have come out of this so far is that since I stopped the Motival I have also had no desire at all to smoke, even though I normally smoke 20 a day. I dont know if it is because I feel so dreadful. But hopefully once the withdrawal has gone I still wont want a ciggy. Do write to the ddlg they will definately help you. Speak to you soon.

Take care

Lisa XXX

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Dear Jenny

I to stopped taking motival suddenly after one years use, after one week i came down with a bang, i really thought i was heading for a nervous breakdown i was having waves of severe anxiety, panic attacks, nausea,crying,muscle spasms,weakness,etc i found it impossible to cope i found myself going back onto one 10mg tablet a day, i do have enough tablets to last me one month, i am pinning my hopes on that Moditem will be available at the end of july, i have phoned the drug company up and they inform me that they are expecting further supplies in stock.Iwill then reduce my dosage slowly and sensible,it is very dangerous to withdraw this addictive drug suddenly. take care Barbara adams xxx

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Hi Barbara,

I am so sorry to hear that you have had such a bad time - you poor love my heart goes out to you.

Yes you are totally right in that the drug company have said that Moditen is coming back between 30th July and 7th August. I am doing exactly what you are doing in withdrawing very very slowly from Moditen but remaining on the Nortryptyline part of the old drug Motival. I am expecting to be totally off Moditen all being well early in the New Year and then I will stabilise out for a few months before commencing tapering off the Nortryptyline competely too.

Have you swopped on to the two components yet or are you still on the motival tablets? Just to warn you when you do swop over if you have not already it does take a while for your system to settle down on the two parts of the drug but it does eventually so don't be too worried if you feel not too well for a while. It is also so much easier to taper off on just one drug at a time rather than trying to come off two at once which is what was happening when I was cutting down on the Motival tablets.

If you would like to email me direct please feel free to do so. I am in touch with quite a few other people in the same postion as us.

The very best of luck and if I hear anything more about the avaialability of Moditen I will let you know

Take care, best wishes

My email is ****

Jenny

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Dear Pam

I to am suffering from ibs symtoms after cutting down to a quarter of a motival,i am suffing exactly the same symtoms as yourself,every day is a struggle, i was told by the doctor to take more nortripterline tablets that is the none addictive half of the tablet, but nothing seems to help,i have been told that the withdrawel does come to an end after about six weeks.

anyway good luck. Barbara xx

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Dear Barbara,

I just thought I should let you know that withdrawal effects from stopping Motival can last an awful lot longer than 6 weeks. The fluphenazine part of the tablet (the most addictive part) is now available again - it is called Moditen. I was told by my Consultant (who is an expert in the field of tranquilliser and anti-depressant addiction) to cut down very very slowly on the fluphenazine (Moditen) as it is a very potent drug and cutting down too fast can cause people to have fits. He also said that the Nortryptyline part of Motival was far less addictive but it still is addictive and once again should be cut down very slowly to avoid any dangerous or unpleasant effects of coming off too fast.

I hope so much the above has helped. I don't want to scare anyone but I do think people should be aware that it is dangerous to stop taking Motival or the two drugs in Motival abruptly.

Best wishes to all

Jenny

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Dear Jenny

i am always pleased to recieve your replies, they are helping me very much,in my last lettter i mentioned that i had cut down to a quarter of a tablet,i am cutting down half a tablet at a time, is this amount to much to drop in one go, my chemist managed to get hold of 100 motival for me so really i am very lucky indeed, I am totaly exhausted and unable to go to work, i am really battling to get through each day.i would love to no how the other people are getting on.

Best Wishes Barbara

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Hi all of you poor people trying to come off and/or replace Motival,

I've been on Motival for about 16 years for pain control in connection with IBS and interstitial cystitis. It has been fantastic and changed my life - although I'm aware it shouldn't be prescribed long term. Now that they have stopped making Motival I transferred to its two constituent drugs taken separately: Moditen and nortryptiline. I wanted to come off the Moditen because it's such a dodgy drug and my GP, who is very helpful, has been trying to get a licence to obtain it in liquid form from the US, so that I can taper the dose very gradually. Unfortunately the manufacturing company for this are taking a long time to reply to his application and I am intending to chase them up tomorrow. Then I heard yesterday that Moditen is now (temporarily?)unavailable which threw me into a panic. If anyone has any up to date info on this situation I would be grateful if they could email me at ****. I will find out the name of the supplier of the liquid fluphenazine and post it on the site for others to chase up too and maybe get their GPs to get a licence for it. Good luck everyone! Grainne

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Hi,

As a follow up to the previous posting I made re Motival and fluphenazine supply, you may be interested to know that my wonderful GP is trying to obtain a supply of Fluphenazine Oral Solution through the following company:

Bhagya Munagoti, Technical Information Officer

Durban PLC

180 Northolt Road

south Harrow

Middlesex HA2 0LT

Tel: 020 8869 6500

Fax: 020 8869 6565

Don't get too excited however as the company has to apply for a licence via your GP and this takes several months. Our licence application was made on 31st May this year and we still haven't heard, but the Information officer thinks we will soon.

The advantage of the liquid form of fluphenazine is that the dose can be calculated more accurately and a tapering programme can be embarked upon with more confidence.

Best wishes - Grainne

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Bad news. I’ve just been told by Durban PLC that they cannot import liquid fluphenazine from the company they had hoped as the US manufacturers won’t provide the TSE statement which guarantees it isn’t contaminated by mad cow disease or something. They are looking elsewhere, but are not optimistic.

Do please email me at **** if you hear of any way one can obtain this drug in liquid form.

Thanks. Grainne

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Dear Jenny

I have been given a prescription for moditen by my doctor but still cannot get the tablets, i really need them now as cutting down so quickly as made me suffer from depression, help please.

best wishes.Barbara

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Dear Grainne

Have you recieved my e-mails yet, Barbara

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Hi Barbara,

The latest info I have is that Moditen are back in production and should be at wholesalers any day now. I have got 14 tablets about a week ago (my gp will only prescribe me 14 at a time which is not a lot of use really but better than nothing!) I think some wholesalers still do not have a supply but it really will be very soon now so hang on in there. I so sympathise as I know only too well how awful it is having to cut down fast - it's sheer hell to be honest.

Take care and please let me know how you are getting on.

Best wishes to all

Love,

Jenny x

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Dear All,

I rang the drug company today (21.8.06) and they told me that Moditen should be available this week all being well. I do hope they are right as a few weeks ago they assured me Moditen would be available on 7th August!!

Best wishes to all

Jenny:?

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I came across this site by chance and it has been very reassuring to hear about other people's experiences (albeit unpleasant) I have taken motival for over 25 years and had got down to one every other day when the supplies abruptly dried up. I used my remaining stock to phase down but have felt really bad for two weeks now, primarily with stomach and back pain, together with interupted sleep patterns. Although my consultant has offered the alternative cocktail, I'm trying to brave it out.

As with most drug companies it's profit before patient but it beggars belief the apparent lack of communication between the supplier, the health professional and the poor old patient, who only finds out from the pharmacist. I wish everyone the best of luck in coming off this drug ----- John

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Dear John,

My heart goes out to you in your battle and I think you are incredibly brave trying to stick it out. As you have most likely seen the Moditen part of the combination of Motival is now not available. I emailed the drug company Sanofi Aventis again on Friday and having told me the day before that the drug had arrived with the manufacturers and was just being tested for quality control which would only take a couple of weeks, the email told me something completely different in that it would now be at least 3 months before Moditen becomes available again. As you say the lack of information - let alone total mis-information is totally apalling. You are totally right that it is of course profit before patient. Having worked in the medical profession for many years I can assure you that is totally true - the drug companies will spend a fortune wooing the doctors with free holidays and other incentives to use their drugs and could not care less about the poor patient who takes their drugs and gives them the profit at the end of the day.

I think it is inhuman the way people suffer because of a sudden withdrawal of a drug - the drug companies should have a moral right at the very least and a statuatory obligation to give plenty of warning when a drug is going to be discontinued.

Please keep in touch everyone through this site and let us all know how each and every one of you are getting on. Sharing experiences really helps everyone and as John has said awful though it is to know that other people are suffering it is reassuring to know that none of us are alone.

Take care everyone

Best wishes

Jenny :?

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