I've had a fair deal of experience being the patient of psychiatrists in my lifetime and I have to say that I've only known a couple who, I feel, have fewer issues than I do. Now I'm not about to use this post to denigrate a profession that provides real support to people with mental health issues but, rather, to address the lack of training Psychiatrists and General Practitioners have in regard to the anti-depressant drugs they prescribe to patients.
Firstly I'll mention why I have taken on this subject and there may be people out there who read this, who are going through the same problem. I know there are others in my situation as there is an actual on-line support group for us. They, like me, have been left between a rock and a hard place by a drug company who failed them. Now it's hard to believe that government bodies throughout the world would allow a drug manufacturing company to let down consumers who rely on them, but it has happened. All such governing bodies have been able do is issue statements to both the public and doctors to warn them of the unfolding situation that remains still unclear. At first the manufacturer of this drug said there were manufacturing issues and there would be a break in production until January 2020. That was in October 2019. It is now October 2020 and still no drug.
Okay, no more beating about the bush; the anti-depressant in question is called Nardil (active ingredient Phenelzine Sulphate). It is a Mono Amine Oxidase Inhibitor and was first manufactured by Pfizer who no longer make it after selling manufacturing rights to Kyowa Kirin. However the latter company may not be the culprit as Peter Jeffers states in his blog, "A shortage of this antidepressant will kill people":
"Lupin, an Indian pharmaceutical giant that produces the active ingredient in Nardil, is under scrutiny by the Federal Drug Administration for quality control issues."
From October last year I could no longer obtain Nardil from local pharmacies and my doctor referred me to a pharmacy in a hospital that was still able to get it. I was able to obtain my next supply from them for two months until, suddenly, I was informed that my doctor needed to fill in a Therapeutic Drug Administration form and have it cleared by the government so I could obtain more Nardil from the hospital pharmacy. The reason for this was that the drug was running out and they weren't able to obtain much more of it. The pharmacy was very helpful but one day I received a call from them: "We're advising people to see their doctor as we may no longer be able to obtain Nardil."
My response to this was: "Do you have any left?"
"No, but we can obtain some from the USA, but it may cost you up to AU$500."
I told them to order a bottle. I only needed one more, I hoped, as I had already started to wean myself off them. I ended up paying AU$458 for the bottle of 60 tablets for which, normally, as a pensioner I paid AU$7.00. For people not on a pension or health care card it usually costs AU$70 plus. Nonetheless I was incredibly relieved. The thing about Nardil is that it is a highly effective drug, but it is also very hard to get off it, especially the longer you've been on it. It has also only been used as a last resort drug for many years because of its interactions with certain foods. For many people suffering panic attacks, it has been the only effective drug, but you just can't switch from Nardil to another drug. To do so can cause consequences such as psychosis and you need to be free of it for at least two weeks to go on another anti-depressant.
I have been taking it for thirty years and, twenty years ago, I had almost weaned fully off it as I was down to one quarter of a 15mg tablet a day having been on three. I can't remember that far back how long the weaning took but don't recall much difficulty. However, I then had complications from an appendectomy and my health improved when I increased the dose again. Anti-depressants don't just work on mental depression. If the body is physically depressed by ill health, it seems the drug can work to help boost the system. At least increasing Nardil must have done so in my case but I'm not stating this as a medical fact only how it worked for me.
Some years down the track when I was back on three 15mg tablets a day I decided to lower the dose. Again, I don't recall what happened exactly, but I must have had trouble as it took me one year to lower the dose to two 15mg tablets a day. After that I just decided to stay on that dose as my marriage had broken up, I was financially badly off and having trouble getting and keeping work. I was in my late forties and didn't need to add withdrawal to my problems.
Having had problems with lowering the dose of Nardil on that occasion, when the shortage arrived last year, I knew I'd better start coming off them completely just in case they were discontinued. I began weaning in March 2020 even before the Australian TGA (Therapeutic Goods Administration) stated: "Consumers and health professionals are advised that Phenelzine tablets are no longer being supplied in Australia. Phenelzine, which is marketed in Australia under the brand name Nardil, is used to treat major depression."
There is, however, not just an Australian shortage but a global one and no one knows what's happening next. The Nardil support group I use on the site, Drugs.com, in a section called 'the Recovery Village' has people from around the globe who have written of their experiences trying to obtain it. The last time I tried to post a question I was unable to for some reason and so I hope the site is still operational. What became clear from reading of other peoples' experiences was the distress they were going through. Many had previously tried other antidepressants and found Nardil to be the only one that worked for them.
This brings me back to the reason for writing this post and that is the lack of knowledge of medical professionals in regard to antidepressants. When people are put on them by a doctor it is truly a matter of trial and error which drug will work for them and, boy, do I know that for a fact. I shall first state that antidepressants come in different types: MAOI's (Monoamine oxidase inhibitors), TCA's (Tricyclics), SSRI's (Selective serotonin reuptake inhibitors), SNRI'S Serotonin-noradrenaline reuptake inhibitors) and NNASSA's (Noradrenaline and specific serotonergic antidepressants.
As I have previously stated Nardil is an MAOI and, before I was put on it by a neuropsychiatrist, my General Practitioner (yes, really, I let a GP put me on an antidepressant) put me on a Tricyclic one. This did not go well (Please note: TCA's may work for some people, just not for me). I was already depressed from a rocky marriage and suffering the panic attacks I had so brilliantly overcome on my own over five years earlier. I didn't need to be in a worse place but that's exactly where the TCA's sent me. I felt as if I was going mad. I don't know how to describe the feeling but it was like nothing I had ever experienced. After three weeks on the drug I went to my GP and told him how I felt. Now I knew him well and he was a good doctor but, and it's a big BUT, he didn't believe I'd given them a proper chance. In fact he didn't believe I'd been taking the full dose but I had. To prove to him that I was, I remained on them two more weeks before giving up. It had been a truly frightening experience and, as an adult, not to have a doctor believe me was galling.
One sad and sorry truth about people with mental health problems is that they suffer from a lack of credibility, not only from doctors but people in general. I know this well as I began suffering from Obsessive Compulsive Disorder at the age of seven. I'm highly intelligent (as is common among OCD sufferers), logical and not deluded but even my parents doubted me in other respects from that time on. Having a mental problem that is not organic or a psychosis does not make a person irrational in other areas. It is something that, as a patient in particular, you have to watch out for when dealing with doctors, even ones you trust.
The neuropsychiatrist who put me on Nardil said one extraordinarily enlightening thing to me: "Doctors and most psychiatrists know nothing about antidepressants." Having been through the hellish experience with TCA's under my GP his words hit their mark and this year, when the hospital pharmacy referred me back to my doctor, my warning antennae went into overdrive. Who could I go to for help thirty years down the track?
I suspect no one as, recently, a friend told me the experience of his friend who was put on an antidepressant and had the same experience I had had on the TCA's. I realised that thirty years after going on Nardil doctors still knew little about antidepressants and were still blundering about in the dark, albeit with good intentions, and their patients were their guinea pigs. So what did I do? I Googled psychiatrists in my city with a view to finding ones who had experience weaning patients off antidepressants.
I may as well have been looking for the Fountain of Youth. I rang the RANZCP (Royal Australian and New Zealand College of Psychiatrists) - "No, sorry we can't give recommendations. Have you tried Your Health in Mind run by the Australian Department of Health?" I did, no luck. I even rang Lifeline. No luck there either but I really admired their spiel as I held on for an inordinately long time as they promised to answer the call asap and their recording remained attentive and reassuring; really. Wonderful organization.
I am now seven months into weaning. The first two weeks I lowered my Nardil dose one tablet in one week. I was fine for ten days and then I wasn't. It wasn't depression or anything mental at all. It was physical. I was lethargic, I itched, my eyes watered, I yawned and I had no energy. I boosted my dose back up to one and a half. Things improved after a week and from then I went down a quarter of a tablet every two weeks. The lethargy, yawning and then headaches kicked in. I'm now on half a tablet and at least the yawning has subsided, but the headaches have not. Added to all this, while trying to avoid Covid-19, wearing a mask to the shops, losing my job as their were no customers and staying home, I caught pneumonia from a sick bird. I, and my doctors (when I was in hospital) and a GP, figured the bird had Psittacosis, which is zoonotic and carries to humans as pneumonia. Who knew? I'll add a suggestion here: if rescuing sick birds, wear a mask and gloves. It can carry not only by droppings and beak to beak but by feather dust. Sadly, the bird died. I am no longer feeding birds and, I suspect, weaning from Nardil over months also lowered my resistance.
After one week in hospital I was sent home where, for the next two weeks, I still felt awful. The hard part of this was figuring if this feeling was from the pneumonia or the withdrawal from Nardil. I was sent to have and MRI for the headaches. Nothing showed thankfully. It's six weeks now and I'm beginning to feel closer to normal but the headaches and some nausea and sometimes lethargy kick in at will. Also, the psychological part kicked in post pneumonia with feelings of dread and despair. This I figured was definitely Nardil withdrawal. (I should add that it's not called withdrawal when coming off medications, it's called discontinuation syndrome. I personally don't care. Withdrawal is withdrawal.)
Such feelings made me actually contemplate finding a psychiatrist, a horrible thought. My doctor referred me to one who turned out not to be taking new patients and then she printed a list of suitable ones but I think it is the entire directory, all thirty one pages of the psychiatrists in my city and suburbs, so I could phone and get the one able to see me earliest. As my feelings of doom are subsiding I'm no longer sure I want to. There is only one who deals with medication addiction withdrawal and, after tests, you are admitted to hospital and then, apart from whatever else he does, put in group therapy. Some cures seem worse than the condition so I think I'll see how I go alone.
Last year a journalist, Chloe Booker, wrote an article in the Sydney Morning Herald (a respected Australian newspaper): "Nausea, panic, tears - why wasn't I warned", about withdrawing from an antidepressant. She spoke to Professor Derelie Mangin from McMaster University in Canada who has carried out a long term trial of withdrawal. I hope Chloe Booker doesn't mind me quoting Dr. Mangin from her article here:
“Drug companies really only have a mandate to their shareholders to do the trials that will bring the drugs onto the market,” she explained.
“The system is not structured for anyone to have responsibility. Given the lengths of time that these drugs have been on the market, it’s extraordinary that we still don’t have the kind of evidence that we need.”
In other words, the emphasis has been putting drugs into the marketplace, not also training medical professionals on how to get patients off the drugs. Considering the vulnerability of people needing antidepressants, that is an extraordinary omission by the medical profession. It really is the elephant in the room that, especially after the recent example of Nardil becoming suddenly unavailable, needs to be addressed.
I still have half a tablet to go to get off Nardil completely. It is one of the two irreversible MAOI's, whatever that means. One is supposed to be able to withdraw from it but it also permanently, thus irreversibly, alters enzymes in the brain. I've copied the quote below from an article in the Psychiatric Times:
"When an MAOI covalently binds to the enzyme, it is irreversibly inhibited and the enzyme is permanently deactivated.3
Enzyme activity cannot be restored until the body replaces the enzyme
through new enzyme synthesis. Restoration of full activity can take up
to 2 weeks. Tranylcypromine and phenelzine, the most commonly prescribed
MAOIs, are nonselective, irreversible inhibitors of isoforms MAO-A and
MAO-B."
Now I have absolutely no idea what this actually means. Will I need something to replace Nardil even though I don't want anything? I'm even wondering if a psychiatrist would know. It's hard enough coming off a drug without having to obtain a medical/pharmaceutical degree to understand what's happening. If only someone was trained in withdrawal to tell me.
Good luck to you all in this time of Covid-19. Please feel free to leave comments or related experiences in the comments section.
UPDATE ADDED 14th April, 2021.
Three weeks ago today I took my last dose of Nardil. It has taken another six months since completing the post above to do so. At the time I wrote the post I had reduced the dose down to a half of one 15mg tablet per day having been on two 15mg tablets at the start. The day after finishing the post I lowered the dose to one quarter of a tablet and alternated between a half a tablet and a quarter for a week before settling on the quarter.
Eventually, a few months later, towards the end of withdrawing I was taking one sixteenth of a tablet and then not taking a dose for four days before taking the next dose. There was still lethargy and headaches, which I thought would never end, and I became depressed and emotional to the point where I felt I really might need a psychiatrist. The latter two symptoms came in waves so that sometimes I thought I was okay and then I thought I wasn't.
The final crunch came when my doctor convinced me to have a colonoscopy only two years after the last. If there is one thing I hate it is the preparation for that procedure because it requires drinking 3 liters of preparation liquid in an awfully short time plus a glass of liquid prior to that with 3 tablets designed to empty the bowels.
This really set me into a fit of nerves. I barely managed but did it. The odd thing was that in three previous colonoscopy preparations I hadn't felt nauseous but I really did this time. I think the reason for this was that one side effect of Nardil that I will miss hugely, is that I couldn't throw up and rarely felt nauseous for thirty years.
Now that I have finished taking Nardil I still wake up feeling as if I need to keep sleeping even after ten or eleven hours and I remain groggy for two hours. There is sometimes lethargy and yawning still but I'm better if I go to bed earlier even though I don't fall asleep for an hour or two. The feelings of doom and depression come and go but, apart from Covid 19 creating a pall over all of us, I feel more hopeful.
It is hard to believe that the tiny dose of Nardil I was taking towards the end was having any effect on me, but when I tried to do it faster, the lethargy was worse. The feeling that I've been functioning at about seventy percent of capacity for a whole year has been emotionally draining and no wonder I have been depressed. In fact it's hard to know if it's the absence of Nardil or the draining experience of discontinuing it that's caused my depression.
I'm fighting to regain energy to this day. I'm finding that pushing myself a bit helps. I have even managed to re-upholster six dining chairs and have become a whizz with a staple gun. Removing the staples to take off the old upholstery first was also an exercise in muscle building and arm wrenching.
Absence of Nardil has made me feel more self-centered, not in the conceited kind of way but in the way that everything is internalized. I remember feeling like this before taking Nardil thirty years ago. Time also drags on. It's a strange sensation but the days seem longer and I remember feeling like this prior to Nardil as well. I get very bored. It's one reason I needed a good physical project to take on.
I haven't made up my mind about taking another antidepressant yet. I know Nardil has changed me and it's for the better. I would only take another antidepressant if my energy didn't return and I felt it could boost it. If my depression gets worse I may consider taking one but I feel I should wait and see. I am a calmer person now and I hope that stays with me, however, being calm at this time with this awful pandemic is hard and I'm also using my will power to try and stay that way. I don't anticipate my panic attacks returning. They didn't when I was down to a very low dose years ago and I feel they won't come back.
I've written down my experience in the hope that people who have gone through a similar experience might benefit from hearing mine. I've also done so in the hope that any medical professionals reading this might consider the real need for more studies to be undertaken into antidepressant discontinuation. There are well known psychiatric bodies with great influence that don't consider that it's a problem but, on the other hand, there are groups, among whose number are psychiatrists and pharma psychologists who have gone through their own discontinuation syndrome (withdrawal) problems, and who are calling for pharmaceutical companies to undertake studies into antidepressant discontinuation and for psychiatric institutions to acknowledge that so many people having problems coming off antidepressants can't be wrong. They are doing so because of the number of support groups that have sprung up online where people help each other to go through the process because there is nil or inadequate medical support.
UPDATE: 26th April, 2024.
It's three years since my last update. I've been off Nardil for that length of time now. My energy finally returned and the headaches left, as if they'd never been there. A few months after the last update, I finally resorted to taking Zoloft (Setra) tablets. I'm on 100mg once per day. I couldn't shake the feelings of dread and the heightened sense of self and time passing slowly. The dread went after a few months. Whether the Zoloft helped or not, I don't know. It may just have been time that healed. The heightened self-awareness and time passing slowly is still there. I think I was always like that until I went on Nardil, so I have to live with it. I appreciate all those years that Nardil made it easier, but I cope with it.
I thought I might gain weight on Setra, but that didn't happen thankfully, and I've had no side effects from it. I don't know if they're actually doing anything, but my ship is in calm seas and I don't plan to rock the boat. I don't imagine that coming of Setra would be anything like coming off Nardil. I'm on a low dose and, having gone through one withdrawal (discontinuation), I know I can manage it. I don't, however, plan to try anytime soon.
Good luck to you all and never give up.
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