Question posted by Sue2306 on 29 Dec 2020
Last updated on 19 September 2023
It is not cost effective. Psychiatrist said this morning to change to venlafaxine (telephone consultation).
He wants me off of phenelzine in 2 months rather than what I would prefer. That is over about 6 months.
Not happy as he is only a locum and took now interest in my views.
Probally wants to keep GP happy only.
At least no more contact with him needed .
Has anybody else any experience of changing from phenelzine to venlafaxine?
In 2020 I had been on phenelzine a mere 4 weeks when my consultant psychiatrist informed me it was no longer to be supplied in the UK. She said Isocarboxazid was a very similar MAOI to Phenelzine so she put me on that. Isocarboxazid is great. I’m not aware of any side effects. In the past, I experienced loads of side effects on Venlafaxine which diminished my quality of life, even though I found it effective as an antidepressant. I’m v happy to be on Isocarboxazid.
NARDIL (Phenelzine) is now owned, and will be distributed by NEON Health Care. They will have plenty of stock for UK, Australia, and NZ later this year. The factory in the UK that was making Nardil for years was closed. NEON are waiting on the new factory to start manufacturing NARDIL. The NARDIL will cost exactly as it has before we all had the shortage. Your psychiatrist's suggestion is unhelpful and could potentially cause a major relapse.
Hi Sue ,
I live in Bexley so not far from you in Medway . Been on Phenelzine since the age of 26 , am now 58 . Off meds for one year before I became pregnant with my youngest and symptoms came flooding back .
Just before Christmas I picked up a new prescription of Phenelzine from my pharmacy but had to explain to them they had to do a special order .
I will let you know if I get any correspondence from my g p or CCg about stopping phenelzine .
Definitely definitely fight this decision and consider medical negligence solicitor.
Interestingly , I am now being assessed to see if I have POTs which could also be the cause of my symptoms.
Will keep you posted re any correspondence or info from my gp .
Thinking of you
Suzanne
Hi Sue ,
Had another thought , if you can afford private consultant with that Priory they may be able to help . This is the only way my son was helped to get the right meds for him and then gp had to honour meds prescribed at consultation.
I know the sinking feeling of worrying about supply of meds let alone having to come off them that quickly. Disgraceful .
Any assistance I can be of please let me know
Suzanne
Thank you.
Great to know that you are so close to me.
Sue
I have just had email from CCG saying :-
"I can find no information that this request came from the CCG, however if you can request that your GP send us a copy of the letter they refer to I would be happy to look in to it’s source.
As previously stated by my colleague Louise the CCG does not make clinical decisions regarding a patients care and therefore this is a matter to discuss with your GP who has the clinical responsibility for your care."
I have asked doctors surgery to do this
Will wait and see what happens
Sue
Asked GP surgery for copy of letter from CCG saying that I have to be referred to a psychiatrist etc..
Appears that it does not exist.
Now, apparently Phenelzine cannot be prescribed on 'special order' unless I am under the care of a psychiatrist.
Was told to ring psychiatrist but it appears that doctors are just passing the buck.
GP telephoned to try and sort the mess so even more confused.
It is now up to GP and psychiatric team to sort this mess out.
I really can't take anymore of it.
I have given up trying to cut down so will continue with what I have left and then stop. GP know I would rather have quality of life over weeks of being nearly dead.
Has anybody else been told that they can only be prescribed Phenelzine on special order if they are under a psychiatrist?
They are adamant that CCG instructed referral to psychiatrist but no proof.
Sue
Was told on Friday, in order to be prescribed Phenelzine on special order I have to be under psychiatrist.
Emailed letter to GP explaining my feelings and asking for referral to Maudesley in London . GP has done referral so will hopefully be able to get further supply when seen. Hopefully before I run out.
Expected to be off Phenelzine in 4 weeks now!
Sue
Hello, I highly recommend that you don’t take ventalaxfine at all! My husband was on it for about 4 years, his dose at one time had reached 300 mg.
We did manage to reduce it to 150mg until Nov 2019, when he became very ill & was having stroke like symptoms. At the hospital they ran every test possible, including spinal tap. An MRI was not an option in this case, never could fully determine why his white blood cells count was elevated. A doctor passing through his room during this stay, came in to tell us that he had studied the long term use of Effexor (ventalaxfine) most likely the cause of these symptoms. He demanded the dose be cut in half immediately! Over the next 4-5 month time frame of gradually getting off that drug. His behavior & lack of empathy or sympathy was gone, it was like a monster had been released inside my husband. That hospital stay was labeled as a stroke, but never confirmed. August of 2020 my husband was diagnosed with vascular dementia.
Just saying please reconsider what these doctors are trying to give you. If you have Amazon Prime & able to watch movies/shows, I highly recommend you check out a documentary called Letters from Generation Rx. It’s very eye opening & informative.
So sorry about your husband. My husband was on antidepressants and had 2 mini strokes. Then developed vascular dementia and died 8 years ago.
I managed to cut to 3 Phenelzine fine for 4 week's . GP telephoned and said local CCG said I had to be referred to psychiatrist as not seen one for so long..
I had to come off of them as not cost effective. He just killed of part of me the moment he said that. I had already been told that no more prescriptions would be issued until I have a blood test . That is,why I cut to 3 a day. GmGace now had bloods done. Was told to go to 2 tablets a day and fine for a couple of days but then no energy not bothered to get dressed etc. The decision was made before the locum psychiatrist spoke to me He mentioned that it was Medway CCG that instructed GP to not prescribe anymore. So they will not issue any more Phenelzine now.
Went back up to 3 tablets a day 3 days ago and have come back to my sences now a bit..
There is another side to this now and I have emailed CCG asking them to confirm that all patients in this CCG area have been told the same as me.
Also stated that no point in fighting that decision as if it then applies to every CCG then we will all have to fight together!!!
I still do not know if letter really does exist but if it has been sent out to every GP with a patient on Phenelzine I think it may well be stopped for everyone.
If every body has lied to me then there will be trouble.
Maybe will find out more in morning.
I have said to GP that I will not take , Venlafaxine. I take 2 lots of blood pressure medication so can not take the risk
If I reduced Phenelzine I will be a mess so will take until I run out. Not sure what after that. Will wait to see what happens now.
How are you managing with your husband?
Sue
I took venlafaxine (Effexor) for over seven years with no initial or long term side effects. It was a G*d send for me and I very pleased with it's efficacy and safety.
@WC. Did you experience any negative effects from any medication? Because most medication seems like it work wonders for you.
Tyrese
I'm in the lucky 90+% of people who don't suffer any major side effects from medications... and for me that goes for all meds not just psychotropic drugs. When I've started any of the psych meds I've taken all I've ever had was a mild headache and lightheadedness for a day or two.
The trouble for me has always been that I took them for years until they "pooped out". Also, I developed manic episodes (and looking back I had them in my younger years too) so antidepressants were out for me and I was switched to Bipolar medications... that also are working wonders for me with no side effects!
I wish I was lucky enough like you.
Hi, Sue!
While venlafaxine is an excellent choice for depression... I took it for about seven years with very good results... I wonder why, if you were doing so well on an MAOI, you might not want to try switching to another MAOI like Parnate or Marplan.
It's just a thought that you might want to discuss with your doctor. I have no idea whether insurance would cover them or how expensive they are though.
Best regards and I hope you get a solution quickly.
Wildcat
PS, Be careful about buying drugs online. Many of them don't follow our strict guidelines for their manufacturing.
Many thanks for your reply.
I am in the UK so cost covered by NHS
To get Phenelzine on special order is expensive and doctors not prepared to pay out
I am just going more and more downhill as I cut down and next week have to cut to one tablet a day for 4 weeks and then stop for 2 weeks before I can start anything else. Have just spoken to doctor and they will not supply any MAOI's as there are newer drugs available now. Will not even let me have written prescription to buy my own.
Just fed up with it all.
Sue
It's totally ridiculous! Well, it might be worth trying venlafaxine because it's very effective for many people. Since it's a new and different class of antidepressant you may initially have some side effects but they generally resolve within just days to a week or two. There are also OTC products that can be used if you consult with your pharmacist or chemist for suggestions.
Good luck... if you have questions or concerns about this medication please free to post them
Hi Sue ... Not spoken for a while, I’m so sorry to hear you’re having these problems with your GP you must be devastated I know I would be, it’s just so cruel and unnecessary, we have Target Health Care supplying the capsules and when Neon Health Care get up and running in a couple of years cost won’t be an issue as things will revert to the way they were when Kyowa Kirin were producing it. I’ve spoken to a very knowledgeable lady in one of my support groups and I’ve pasted her reply below. I hope it helps you.
She needs to approach a new practice in her area but before she signs up with practice she needs to contact practice manager to say that she has been on this drug so many years and if she joins that practice will they prescribe the drug
If not then she needs to find a solicitor to act upon her behalf being medical negligence no win no fee and get them to represent her and deal directly with the CCG she is under
I know it feels hopeless at the moment especially as you are not taking your required dose so are starting to feel unwell but you’ve got to summon up your strength and fight for this drug as to you and me and many many others it is a life saver and I’m afraid I don’t think much of a psychiatrist who obviously knows so little about MAOI drugs that he would even consider venlafaxine as a suitable replacement for someone who has been put on Phenelzine in the first place because they had treatment resistant depression. They work in totally different ways. It’s a pity we can’t speak but I don’t seem to be able to private message you anymore. Stay strong Sue.
Many thanks. Wishing everybody on site a happy and peaceful New Year.
Sue
Desperately trying to get copy of letter from CCG saying that I have to be referred to psychiatrist as I have not seen one for so long. Phenelzine cost £230 for 4 weeks at 4 a day.
Been refused written prescription to get them myself.
If CCG say u have to come off them then that would apply to any GP i think.
Have gone back up to 3 a day as can't manage. Psychiatrist was a locum.
It was all pre arranged that he would go with GP as he was also told CCG would not pay as,not cost effective.
Have lymphoma and peripheral neuropathy so can hardly walk. Balance gone. Focusing affected so what is the point of doing this to me?
Sue
This notice would at least show your GP how wrong he is to try and take you off phenelzine in just 2 months. The disruption notice states it takes AT LEAST 6 months .
Here goes ... https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=103609
Copy and paste the link in your browser and it takes you to the MHRA site and the supply disruption notice you’re looking for.
Motherbaggins
I've never made that particular switch but I just want to say that I've been taking venlafaxine (Effexor) for over 7 years and have been very happy with it. I find it very effective and have had no side effects at all. Another plus is that there are no dietary restrictions.
Yes, I was on venlafaxine for several years in addition to Nardil, and a couple other drugs (SeroqueL Lamictal) if venlafaxine helped me at all, I didn’t feel it. I was put on Nardil (the ONLY drug that has really helped me, or at least helped me the most) years before venlafaxine and have been on Nardil for 32 yrs, with a few breaks that got me so sick that I only recovered when put back on Nardil. When I was taken off venlafaxine, I had no withdrawal symptoms and didn’t need it at all. Why does he want you to switch to venlafaxine? Just because it’s not “cost effective?” I’d suggest you stay on Nardil.
Thank you for your reply.
I have to come off of Phenelzine because it is not cost effective and the GP refuses to prescribe it anymore. Local CCG apparently wrote to GP saying that I have to be referred to psychiatrist as medication too expensive and have to come off of it.
I have no choice in the matter and have ordered different drug from abroad.
Now, after all these years I risk losing everything.
Now at the point of not even bothering to get dressed.
GP has what he wanted and that is all that matters to them.
Do they care about how it is affecting me. Of course not.
There is no way I can stay on Phenelzine as go will not let me have written prescription to get it myself .
Sue
I’m so very sorry your GP is making you get off the drug rarely used Nardil (MAO inhibitor) and I’m sorry you can’t take any of the other MAOi’s. It makes no se de to me. Big Pharma charges so much they don’t care about anything but profits. All I can say is I hope that you can find something else that is helpful for you.
depression, phenelzine, venlafaxine, drug
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