GPK1956 - Pristiq - where to next...

[GPK1956]

I started Pristiq (desvenlafaxine) in August 2014 after yet another tearful visit with my GP. I think he was at a loss to help me after many other discussions, investigations (thyroid, iron, GI, immune), treatment with CBT etc. I was very anxious, especially on waking in the morning and having suicidal thoughts most evenings before falling asleep. I agreed to try an antidepressant and we picked Pristiq almost at random. I initially tried to take it in the morning but the nausea, dizziness and other side effects made me switch to bedtime dosing.

 

In some ways I am equivocal about coming off it, and am considering a switch to Valdoxan (agomelatine) as I feel that I need a safety net giving my genes and current circumstances. Overall in fact, I suspect that most of my mental health problems are a combination of genes (anxious mother, depressive father), long term treatment with corticosteroids for an autoimmune condition (mania/suicidal thoughts at high doses, depression during and after the taper) and general high pressure academic and work environments over the years. N.B I was not on steroid therapy when I commenced the Pristiq.

 

The main driver I have for ceasing Pristiq is the almost paralytic exhausted I am suffering, along with restless legs, that are affecting I assume my sleep but are also manifesting in waves during the day and impeding my ability to work and study. My memory has also been seriously affected, and as a result, so too has my ability digest and retain complex new information and to produce work of a high level.  I am also having to work very hard to hide this impediment from my colleagues and supervisor. Further, it has meant a reduction in social life and a huge mental barrier to maintaining an exercise regime which is an important part of my life and recovery. This fatigue is actually the biggest issue I have currently as the psychosocial factors present 2 years ago have long since resolved. Much of that by hard work on my part with mindfulness meditation, changes to nutrition and exercise and moving overseas to take up new opportunities away from some of the old triggers and family dramas. 

 

Pristiq is not licensed in the UK and when it was suggested that I switch to venlafaxine XR I discovered that restless legs and REM sleep suppression were listed as side effects for this parent formulation and therefore assume potential for this to also be induced by its metabolite desvenlafaxine. I have now been referred for sleep study as the usual investigations (iron deficiency anaemia, etc,) have drawn a blank. But given what I know, it has been an easy decision not to remain on either drug long term. I also strongly suspect that they would ask me to cease taking them before assessing me for other conditions e.g apnoea, narcolepsy etc.

 

Having read the tips for Tapering here on the forum, dug through some of the literature and emailed Pfizer multiple times to no avail I have formulated my strategy as follows. Initially I plan to try taking Pristiq in the morning to assist my sleep to be as refreshing as possible. I can only hope that the side effects (nausea, dizziness) were due to the induction period and will not be present now. Then I will switch to Effexor instant release and taper slowly over 4 months. For the first week I I will alternate days between 50mg Pristiq and 112.5mg (3 x 37.5mg) Effexor, in 8hr divided doses until I am confident that they are equivalent dose wise. My current GP suggested 75mg only, but the pharmacokinetic data indicates that desvenlafaxine is only 55% (half conjugated, half not), so I want to start higher. Once I am confident that this won't be too dramatic a dose change I will stick with Effexor only and taper from there.  As soon as I hit 75mg daily dose I will drop the night time dose and consider introducing agomelatine as I have heard good things about it for anxiety and know that there is no discontinuation effect. I will take the second half of the taper as slowly as possible but I really need to get on top of the sleep problems and fatigue as soon as I can, without compromising my mental health or inducing hideous withdrawal. Hopefully as I lower the dose the symptoms of restless legs and crushing fatigue will also recede. If not, I may introduce agomelatine earlier as it has good sleep induction and maintenance properties that could assist.

 

The only other thing I am taking is magnesium as I noticed a reduction in the restless legs after using Epsom salts in the bath and supplementation, again, shows promise for managing anxiety. Tonight is the first night I will skip Pristiq and take the next dose in the morning. I have only missed an evening dose once before and by midday the effects were already noticeable. I hope taking it with breakfast will give a seamless switch. 

 

Wish me luck.

 

GPK.

 

Edit. I am also slowly ruining my expensive adolescent orthodontic work with Pristiq induced bruxism. Another good reason to cease.

Edited July 31, 2016 by scallywag
tags added

[ChessieCat]

Hi GPK and welcome to SA,

 

Thank you for completing your signature with your drug history.  That is very helpful.  It is suggested that you update it each time you make a change so it remains current.

 

Other members here suffer bruxism and some of them sleep with a mouth guard (Moderator Brassmonkey:  Sleeping with a mouth guard can help relax the jaw muscles.  You should be able to get an inexpensive one at a sporting goods store and fit it yourself with some hot water. I've been using them for years and they really help.)

 

If you have not already started taking your dose in a morning, it is a good idea to do it gradually by taking it a bit earlier (eg 1 hour) each day until you are taking it at the time you want to take it.

 

SA recommends a 10% taper of the previous dose with a holding period of 4-6 weeks to allow the brain to adapt to not getting as much of the drug.

 

Introduction to AD Withdrawal Syndrome
 

Why taper by 10% of my dosage?

 

These helped me to understand SA's recommendation:

 

Brain Remodelling (Rhi's Description of Brain Healing)

Video:  Healing From Antidepressants - Patterns of Recovery

 

Here is the information for Effexor:

 

Tips for tapering off Effexor (venlafaxine)

 

Many members have found Magnesium and Omega-3 Fish Oil helpful.  It is best to start each one separately and start at a low dose and build up.

 

This is your Intro/Update topic to ask questions and to journal your progress.  Click "Follow" (top right) and you will receive notification when someone responds.

[scallywag]

GPK -- welcome to SA from me too. You've done an impressive amount of research on tapering.

 

It's good to hear that you are getting some relief from the sleep and RLS with magnesium supplementation and Epsom salt baths.  Another effective way of delivering magnesium for RLS is topical magnesium "oil". Magnesium Cloride (MgCl₂) has a oily feel but is a gel or lotion.

 

Initially I plan to try taking Pristiq in the morning to assist my sleep to be as refreshing as possible. I can only hope that the side effects (nausea, dizziness) were due to the induction period and will not be present now.
 
Then I will switch to Effexor instant release and taper slowly over 4 months. 
 
For the first week I I will alternate days between
50mg Pristiq and
112.5mg (3 x 37.5mg) Effexor, in 8hr divided doses
until I am confident that they are equivalent dose wise.
 
My current GP suggested 75mg only, but the pharmacokinetic data indicates that desvenlafaxine is only 55% (half conjugated, half not), so I want to start higher.
 
Once I am confident that this won't be too dramatic a dose change I will stick with Effexor only and taper from there.  
 
As soon as I hit 75mg daily dose I will drop the night time dose and consider introducing agomelatine as I have heard good things about it for anxiety and know that there is no discontinuation effect. 
 
I will take the second half of the taper as slowly as possible but I really need to get on top of the sleep problems and fatigue as soon as I can, without compromising my mental health or inducing hideous withdrawal.
 
Hopefully as I lower the dose the symptoms of restless legs and crushing fatigue will also recede. If not, I may introduce agomelatine earlier as it has good sleep induction and maintenance properties that could assist.

 
I hope you'll give morning dosing of Pristiq a good trial, at least 4 weeks. It's generally much, much safer to stay on the same drug rather than to attempt a cross-over to another drug. Pristiq's half-life of 11 hours (in healthy subjects with no liver or kidney impairments) may give you sufficient energy during the day and decreasing energy in the evening to assist with sleep.
 
Agomelatine is a melatonin receptor agonist. What's your experience with melatonin? Some members here have found melatonin helpful with sleep, both in resetting a shifted sleep onset to an earlier time and improving quality of sleep.

Melatonin for sleep
 
Although it will occur well in the future, I'm concerned for you about your proposed abrupt change in dosing schedule, highlighted as blue text in the quoted excerpt from your post.

[GPK1956]

Hi scallywag and Chessiecat. 

 

Thank you both so much for taking the time to write.

 

Chessie.. you reminded me to include fish oil in my signature. I have been using it for many years in association with my autoimmune condition due to its anti-inflammatory properties.

 

scallywag... I have successfully used melatonin when prescribed by my GP during steroid therapy. The dose was high (3mg) but it was essential to counteract the cortisol driven insomnia during the high dose phase of treatment. I felt safer using a combination of melatonin and benzodiazepines (never together) interspersed with no assistance to address the insomnia rather than long term, daily use of benzos. I have also successfully used it for jet lag due to long haul travel but learnt my lesson about true physiological dose when I attempted to use it recently to address these sleep problems and found that such a high dose exacerbated my zombie like state the next day. 

 

Your comment about giving morning dose Pristiq 4 weeks is interesting as I will be travelling overseas again in a month and was undecided about commencing my taper before I left, while dealing with time zones and jet lag. I think perhaps I will hold off until I return from holiday, unless the morning Pristiq makes things worse. Melatonin is prescription only in the UK but perhaps I could ask my GP to provide a 1mg or 500mcg script for me to try prior to Valdoxan, if I go down that route. 

 

I understand your warning about removing the 3rd daily dose of Effexor. It was certainly not clear from my post, but I intend to reduce only the evening dose as part of the tapering strategy initially, so that I have minimal active drug present in my system overnight. The morning Pristiq is the first step in this process. While it might be ideal to remain on Pristiq long term, if I stay in the UK this won't be possible. Obtaining a script once from my home GP was tricky and shipping prescription medication out of the country is only permitted for short term (<3 months) supplies. In essence I might be able to sustain Pristiq for another 6-9 months with the help of family but no longer as the GP will not consider it an 'emergency script' if I am resident elsewhere rather than 'travelling'. 

 

GPK

[scallywag]

Thanks for explaining the complications involved in continuing Pristiq. Rock meet hard place. You've done well mapping a route between them.

[JanCarol]

Hey GPK - since you love research, I've got 2 words for you:

 

iatrogenic

 

and

 

epigenetic.

 

New studies are talking more about epigenetic factors (Bruce Lipton, "The Biology of Belief") which trigger genetic ones.

 

You need the genes to manifest the trait - but why does the gene trigger in some, and not the other.  Bruce Lipton, a cell biologist, believes that the environmental soup is the most vital factor.

 

Cells are binary - they either grow or protect, not both.  Genes get replicated and sent out to "fix" things when the cell is in binary mode.

 

If the cell is not in growth mode, it is in protect mode.  This is usually caused by environmental stress.

 

His early professor said, if the cell is not growing in the medium, then the change the medium.  And Lipton applies this all the way up into society.

 

Anyhow, that's my brief dip into the epigenetic pool.  I hope you enjoy these words and grow from them as much as I have!

 

Welcome to SA!

[JanCarol]

Just a little background on me:

 

I have madness going back at least 3 generations in my family.  Gran found her mom's suicide, and it surely messed her up, too.  In the tier above me (birthmother, aunties, uncles) there are loads of diagnosable things - I could whip out a few and say depression, delusion, bipolar, OCD, psychopathy, bigamy.  In my tier (half brothers and sister) there is depression, delusion, rage, difficulty in mood control, aspergers, inability to relate to others.  Only my birthmother went to hospital for this (after the death of a child), and I was the first sibling to accept medication.  They always managed to "get by" on weird but eccentric.  And all - fantastically intelligent.

 

So it took some doing for me to undiagnose myself.

 

Then - you might be interested in what I'm reading right now.  I'm reading the book referenced herein, "Blaming the Brain" by Eliot Valenstein - but this article is an excellent summary:  http://www.dana.org/Cerebrum/Default.aspx?id=39354

 

You also might consider "Anatomy of an Epidemic" by Robert Whitaker. 

 

It bent my brain into new shapes that I quite like!  

[GPK1956]

Thanks JanCarol. Epi-genetics is fascinating and there are lots of genetic (anxiety + suicide in mother's side, alcoholism + bipolar in father's) and environmental (prematurity, high pressure social environments) factors that are obvious influences. I am optimistic that we can also influence our present gene expression through things such as sleep, meditation mindfulness and exercise. 

 

Today I feel horrible. Both discouraged that this process will be so slow, that changing to morning dosing has not mitigated the fatigue and from the migraine that I had on Friday after changing my dosing schedule. I have so much work to tackle but all I can think about is lying down to sleep and wishing that I didn't have to face real life tomorrow. Hopefully this will pass and I can look back on it as I have other tricky periods and know that it was a lesson in resilience and possibly even asking for help, something that I rarely do. 

[GPK1956]

I'm starting Effexor instant release tomorrow (3 x 37.5mg) and having second thoughts about zig zagging between that and Pristiq. Will see how I go with split doses of Effexor over the weekend. Had to laugh though, it's labelled with a 'may cause drowsiness' warning. Exactly why I suspect I am getting narcolepsy like symptoms now.

[ChessieCat]

Hi GPK,

 

I'll be interested to see how you go.  Don't forget to keep daily notes on paper.

 

Also, please remember to update your signature to reflect any changes you make so that it remains current and can be seen at a glance.

 

Good luck.  CC

[GPK1956]

So far so good. I thought Day 4 would be horrible but I'm just tired and mildy headachy. What is really fascinating is that I have started dreaming again. Or at least remembering my dreams. I guess this provides weight to my theory that Pristiq suppressing REM is causing my day time fatigue i.e body is endlessly trying to catch up.

[GPK1956]

Hi everyone,

 

Just thought I would update you on my progress. I've successfully tapered venlafaxine down to 18.75mg. Split dose (1/4 tablet) twice per day. I've also had a sleep study and seen a respiratory specialist who thinks it's unlikely that I have any co-morbidities e.g sleep apnoea. 

 

Regarding the taper, I stuck with venlafaxine  (Effexor) only. No switching between desvenalfaxine (Pristiq) and back at the higher doses as I thought I might. There have been some very tough days psychologically. Dark thoughts and hopelessness, but I kept reminding myself that I would keep going until Christmas and hopefully have completed the taper and things would have improved by then. Physically worst symptoms have been headaches when I've spaced the lower doses too far apart. I needed ultimately to move the evening dose to about 3pm, but that's fine.

 

I'm still finding that I'm tired, possibly due to change of season and will likely start taking vitamin D soon to get my through the sunless northern hemisphere winter. If anyone is interested I can send you my taper schedule but I would also be keen to hear strategies for lowering the dose from where I am now. Cutting tablets into quarters is reasonably accurate but any smaller and you are guessing.  The quote for compounding a liquid is is the vicinity of 150 pounds which seems excessive, but I guess it isn't NHS subsidised. 

 

GPK

[peng]

Not sure if this is helpful, but here near Edinburgh part of my NHS Effexor XL prolonged release dose comes in 37.5mg capsules by Bluefish pharmaceuticals, Sweden.

The capsules each contain 3 small, hard sweetener-type tablets of 12.5mg each.

Makes my tapering easier.  (Down to 162.5mg - due to go to 150mg this week.)

 

Best wishes

[GPK1956]

Not sure if this is helpful, but here near Edinburgh part of my NHS Effexor XL prolonged release dose comes in 37.5mg capsules by Bluefish pharmaceuticals, Sweden.

The capsules each contain 3 small, hard sweetener-type tablets of 12.5mg each.

Makes my tapering easier.  (Down to 162.5mg - due to go to 150mg this week.)

 

Best wishes

 

Thanks Peng but I'm on instant not extended release. Good luck with your taper. 

[scallywag]

Good for you for not switching back to Pristiq, that could have made tapering more difficult for you.
 
For clarity purposes, would you add "immediate release" to your signature?

e.g. Effexor (venlafaxine) immediate release 18.75mg

Have you considered using your capsules/tablets to make a solution at home? Because you're taking immediate release, that will be easier for you than if you had been taking XR or XL. You can read more about that in this topic:
Making a liquid from a tablet or capsules

[peng]

 

Not sure if this is helpful, but here near Edinburgh part of my NHS Effexor XL prolonged release dose comes in 37.5mg capsules by Bluefish pharmaceuticals, Sweden.

The capsules each contain 3 small, hard sweetener-type tablets of 12.5mg each.

Makes my tapering easier.  (Down to 162.5mg - due to go to 150mg this week.)

 

Best wishes

 

Thanks Peng but I'm on instant not extended release. Good luck with your taper. 

 

Sure, I saw that.

Just wondered if a change to XL would be worth it if measurement of dose becomes a real pain.

[GPK1956]

 

Thanks Peng but I'm on instant not extended release. Good luck with your taper.

Sure, I saw that.

Just wondered if a change to XL would be worth it if measurement of dose becomes a real pain.

 

Ah ok, thanks Peng. I'm guessing that it might work as an intermediate once daily dose. So perhaps I could go 18.75mg (2x split dose) > 12.5mg (1 dose)> 9.375mg (1 dose). Then perhaps a suspension.

 

When people get down to their smallest possible dose, do they just stop? alternate days? gradually spread the delay between doses out? e.g  

Day 1 morning,

Day 2 afternoon,

Day 3 evening,

Day 4 nothing,

Day 5 morning,

Day 6 nothing

Day 7 afternoon

Day 8 nothing

Day 9 evening

Day 10 nothing and stop?

[peng]

"When people get down to their smallest possible dose, do they just stop? "

 

"Jumping off", it's known as here.

 

Something written about this on other threads - try the ones about "why taper" and "reducing effexor" or some similar wording.

Maybe one of mods will be able to refer you to the precise location .(I'm a relative newbie.)

[ChessieCat]

This might be the one you mean:  When to end the taper and jump to zero?

[GPK1956]

'Jumping off'. Ok, thanks!

 

At the moment I'm stuck at 9.375mg (quarter tablet). The headaches are too debilitating when I try and delay or drop the dose. I guess I need patience and a new strategy. The last GP is spoke to was reluctant to prescribe liquid, so I might have to insist. 

 

 

[scallywag]

I've seen others report that a doctor has been reluctant to prescribe a liquid formulation. Did the last GP you saw give a reason for this?

[peng]

Omeprazole (the PPI) when required in liquid form for a baby, here, special permission had to be obtained to prescribe, as the liquid form was "very expensive".

Don't know if this is significant.

[GPK1956]

Omeprazole (the PPI) when required in liquid form for a baby, here, special permission had to be obtained to prescribe, as the liquid form was "very expensive".

Don't know if this is significant.

 

 

Exactly. As it subsidised on the NHS, that seems to be a common concern. 

[GPK1956]

I'm considering starting Valdoxan (agomelatine) in the next week or so. Since it doesn't act on 5HT receptors it possibly won't help with the physical withdrawal from Effexor (venlafaxine) but might assist with the psychological stress.

 

Any thoughts?

[AliG]

GPK.  As this is a site for withdrawing off psych drugs we don't recommend alternative medications. It is not a good idea to start another drug to help with the symptoms of withdrawal from another.

 

I would be wary of Valdoxan. It was touted at one point as being the new wonder drug - a melatonergic antidepressant but it's efficacy like all the A/D's is highly questionable.

 

Also, it's recommended to have regular liver function tests whilst taking the drug. My doctor didn't even bother to tell me this until after I had been on it a good period of time. I think any medication that requires liver enzyme testing on a six monthly basis is to be avoided at all costs.

 

It was the last antidepressant I was on and it was supposed to help with re- synchronizing the body clock etc. but I found it had the opposite effect and totally messed up my sleep for a very long time.

 

As always, it is your decision . You have to weigh the pros and cons and come to a decision you are comfortable living with.

 

Ali

[GPK1956]

Thanks Ali. Turns out it can't be prescribed by GP's in any case. I would have to see a psych via >3 month wait list etc.

 

So back to slow taper and hoping that all will be ok.

[GPK1956]

Hi all.

 

I have stopped the Effexor. So far so good. The headaches were excruciating there for a bit, but I managed with paracetamol and codeine. I'm fairly tired, but it's getting dark incredibly early in the UK now, so possibly contributing. I may start Vitamin D, but no further plans to try meds for the foreseeable future. There is a lot of stress going on at home right now, but I have Christmas to look forward to and a break away from work as well.

 

Thanks for your advice and encouragement along the way. I'll let you know how things go over coming weeks. 

[scallywag]

GPK, please take moment to update your signature indicating the last dose of Effexor you took and the date you took it.

 

Hope your Effexor-free ride is a smooth one.

[GPK1956]

GPK, please take moment to update your signature indicating the last dose of Effexor you took and the date you took it.

 

Hope your Effexor-free ride is a smooth one.

 

 

Done. I've arranged some CBT to help with things over coming months. Not sure what to do about the bruxism. Dentist next.