Andie: tapering off Pristiq

[Andie]

Cleaning my house this morning. 
 

Lots of GI upset  😡 

[Andie]

Hair falling out in big clumps 😢

 

Small price to pay..but still distressing. 

[Altostrata]

Hello, @Andie, how are you doing?

[Andie]

On 8/10/2020 at 1:40 PM, Altostrata said:

Hello, @Andie, how are you doing?

Hi Alto 

 

I am really happy to hear from you.Things have been really rough to be perfectly honest. 
 

I spent 8 weeks in the hospital after I developed serotonin syndrome. It was the worst time for this is to happen as the hospital I was in became the Corona ‘hub’ where all the sickest patients were being sent and I ended up sharing a room with a positive corona patient and had to isolate in the thick of it. All the private hospitals closed their doors and my private psychiatrist (whom I trust) did not have admitting rights to any of the ones that were open.

 

The best guess as to what was happening to me from October 2018 was that I had lost the majority of norephrine and the time release from the compounded Pristiq-  and was likely having dumps of desvenlafaxine.

 

The addition of the fluoxetine probably picked up the remaining norepinephrine which is why I initially felt better on the fluoxetine and I was little more steady. 

 

I am now having to go through a really hard withdrawal (and am still withdrawing) as it was just too risky to reinstate a serotonergic drug (I even had to avoid certain foods while in hospital or I

developed a severe migraine)
 

I’ve ended up being Blasted with Diazepam And cryptoheptadine which I will be withdrawn off slowly as I still have serotonergic symptoms and my BP fluctuates. I hate the Diazepam but it literally saved my life. 

 

Im blessed in that I’ve got the support of my pharmacist, tox and a good psychiatrist who was desperately trying to get me off the Pristiq in the first place. 
 

The question now is that If whether to use something like lamotrigine or a micro dose of ‘something’ once Im

in a more stable place. Everyone is treading very carefully and watching how I’m responding. I’m recovering in that classic windows and waves pattern but I’m still not quite right. 

In the irony of all of this there was a poster opposite my bed about Desvenlafaxine toxicity and I had every single symptom. Tox

said they are seeing and treating this on a daily basis. 

 

Some days are hard...really hard but I am

hanging in there.

 

Hope you are well too. thanks for everything you do.

[Altostrata]

19 hours ago, Andie said:

The best guess as to what was happening to me from October 2018 was that I had lost the majority of norephrine and the time release from the compounded Pristiq-  and was likely having dumps of desvenlafaxine.

 

The addition of the fluoxetine probably picked up the remaining norepinephrine which is why I initially felt better on the fluoxetine and I was little more steady. 

 

 

LOL, this sounds like psychiatrist-speak. You were taking Pristiq and Prozac together? What dosage of each?

 

From what do you have withdrawal?

 

19 hours ago, Andie said:

I’ve ended up being Blasted with Diazepam And cryptoheptadine which I will be withdrawn off slowly as I still have serotonergic symptoms and my BP fluctuates. I hate the Diazepam but it literally saved my life. 

 

Please update your signature. How long were you on diazepam? You said you went off cold turkey? When was that?

 

Did you also have an allergic reaction? Why are you taking cryptoheptadine? What are your current serotonergic symptoms?

 

20 hours ago, Andie said:

The question now is that If whether to use something like lamotrigine or a micro dose of ‘something’ once Im

in a more stable place. Everyone is treading very carefully and watching how I’m responding. I’m recovering in that classic windows and waves pattern but I’m still not quite right. 

 

 

Who was talking about a microdose of lamotrigine?

 

What are your current waves-and-windows symptoms? How have you improved in the last few months?

 

20 hours ago, Andie said:

In the irony of all of this there was a poster opposite my bed about Desvenlafaxine toxicity and I had every single symptom. Tox

said they are seeing and treating this on a daily basis. 

 

This was in the hospital? What did it say about desvenlafaxine toxicity?

[Andie]

Hi Alto

 

My doctor tried to cross taper me off Pristiq using prozac. 12mg of Pristiq with gradual increase of 1-10mg using liquid Fluoxetine then total discontinuation of the Pristiq. We would test to see if I suffered withdrawal

which for me is horrendous vomiting and nausea. I always felt 10mg was too high and could have switched over at about 5-7.5mg but my doctor was very concerned I would experience withdrawal.
 

I felt better after dropping the Pristiq. The serotonin syndrome developed from continuing on with the  fluoxetine more than 4 weeks after dropping the Pristiq NOT while taking both together. Switching off an SNRI to an SSRI just added to becoming serotonergic. I actually had withdrawal from norepinephrine.

 

The dose dumping of the Pristiq and loss of norepinephrine on the way down was confirmed confirmed by Toxicology and clinical pharmacy- not Psychiatry. My Psychiarist really wanted me off the drugs  after my GP Initialliy

put me on them. He doesn’t want me on any psychotropics except diazepam for now and to watch and wait. I need him on my side to keep

me OFF the drugs should I ever have a medication reaction in the future and he also organised a medic Alert bracelet and hospital alert should it ever happen again. 

 

It was actually Tox that told me to stay away from Psychiatry as they don’t know what they are doing with these meds and deal with the mess they create on a daily basis.Pharmacy said they see the same thing but can’t convince them either. It was confirmed serotonin syndrome and I was on full cardiac monitoring having ecgs and echos. I also had muscle breakdown.

It was not fun. My mood was flat but agitated.

 

Diazepam and cryptoheptadine are first line treatments for serotonin syndrome. The cryptoheptadine, which is a serotonin receptor blocker, was given in hospital and stopped once my BP was more under control. 

 I’m still on Diazepam tds for the continuing serotonergic symptoms. I’ve been on diazepam tds for 3 months owing to the long half life of fluoxetine. Yes, I’m going to have to withdraw slowly and I am Likely already dependent. Believe me, I did not want to take the diazepam and was upset about taking it- but it was that or risk a seizure from the Serotonin syndrome. 

 

Serotonergic symptoms are migraine headache, labileBP, runs of tachycardia, Diahhroea, tinnitus,

jitteriness, hyperreflexia, irritable bladder and muscle spasm , tight ankle joints, and tremor They come in waves and then go away.
 

I have only now started to feel the brain zaps and started to have REM rebound with the odd bout of vomiting which is what I feel like I’m withdrawal from

serotonin. As much as my body hates the fluoxetine, I still get to experience the withdrawal too.

 

it was neurology who suggested lamotrigine to get the signalling in order once I’m less serotonergic instead of using diazepam as I’m having some tremor with flashing lights. 

 

The poster listed: 

 

• hypertension with liability of BP
•  postural hypotension 

• tachycardia 

• dilated pupils and photophobia
• hyper reflexia

• myoclonus 

• hyperhydrosis

• agitation 

• irregular heart beat. 
• High body temperature and heat intolerance
• tremor 

I asked why the focus on Pristiq and was told they had seen a number of serotonergic patients being admitted and requiring intubation and ventilation after being started on 200mg of Pristiq!! 
 

I am exceptionally sensitive to serotonergics and had a similar reaction to diphenhydramine and pethidine as a child.

 

Edited August 14, 2020 by ChessieCat
removed whate space at bottom of post

[Altostrata]

I confess, andie, I am having trouble following your narrative.

 

From 2014 on, you were taking 35mg Pristiq. You must have been splitting a tablet, correct? If any dose dumping occurred, it would have occurred then. "Dose dumping" happens when you split an extended-release tablet, such as Pristiq, which diminishes the extended-release quality. More of the drug gets released into your bloodstream faster than from an intact extended-release tablet. In effect, a split tablet of Pristiq becomes immediate-release desvenlafaxine, very much like immediate-release venlafaxine.

 

If you had been accustomed to an extended-release drug, you might get symptoms from dose-dumping that are like increasing the dosage. The effect of the drug doesn't last as long as extended-release, so you might want to take it in split doses. People who are tapering from extended-release bupropion often split the tablet and take their doses twice a day instead of once a day.

 

Were you taking the Pristiq fragments more than once a day? Whatever you were doing, it seems this was tolerable for several years, so no serotonin syndrome from dose-dumping there.

 

Then from June 2018 you were tapering Pristiq, and ran into problems. Judging by your dosages, it looks to me like ran into withdrawal symptoms, not dose dumping, because you updosed..

 

It's unfortunate your GP insisted on swapping a higher dose of Prozac rather than a lower dose for the 12mg compounded Pristiq you were taking. Your system may have been sensitized by your drug changes. Fluoxetine at too-high dosages can be activating on its own. This seems to be what happened. I guess too much fluoxetine could result in serotonin toxicity or serotonin syndrome.

 

17 hours ago, Andie said:

The serotonin syndrome developed from continuing on with the  fluoxetine more than 4 weeks after dropping the Pristiq NOT while taking both together. Switching off an SNRI to an SSRI just added to becoming serotonergic. I actually had withdrawal from norepinephrine.

 

Most likely, your fluoxetine dosage was too high. Due to its long half-life, it takes several weeks to ramp up to full strength. Dropping the SNRI did not add to serotonicity. "Withdrawal from norepinephrine" doesn't make any sense.

 

17 hours ago, Andie said:

The dose dumping of the Pristiq and loss of norepinephrine on the way down was confirmed confirmed by Toxicology and clinical pharmacy

 

"Dose dumping" occurs when you split a tablet of Pristiq. "Loss of norepinephrine" doesn't make any sense, either. Toxicology and pharmacy gave you an opinion, not blood tests, is that correct?

 

17 hours ago, Andie said:

It was actually Tox that told me to stay away from Psychiatry as they don’t know what they are doing with these meds and deal with the mess they create on a daily basis.Pharmacy said they see the same thing but can’t convince them either.

 

Yes, we are aware of the limitations. The good news is Tox and pharmacy recognized you had an adverse reaction, though the explanations they gave you were fanciful.

 

17 hours ago, Andie said:

200mg of Pristiq!! 

 

200mg Pristiq is a ridiculous starter dose. Is this common among doctors in your area?

 

17 hours ago, Andie said:

I am exceptionally sensitive to serotonergics and had a similar reaction to diphenhydramine and pethidine as a child.

 

This may be why you had such a severe adverse reaction to Prozac. Pristiq is also serotonergic, by the way.

 

17 hours ago, Andie said:

Diazepam and cryptoheptadine are first line treatments for serotonin syndrome. The cryptoheptadine, which is a serotonin receptor blocker, was given in hospital and stopped once my BP was more under control. 

 

17 hours ago, Andie said:

 I’m still on Diazepam tds for the continuing serotonergic symptoms. I’ve been on diazepam tds for 3 months owing to the long half life of fluoxetine. Yes, I’m going to have to withdraw slowly and I am Likely already dependent. Believe me, I did not want to take the diazepam and was upset about taking it- but it was that or risk a seizure from the Serotonin syndrome. 

 

Serotonergic symptoms are migraine headache, labileBP, runs of tachycardia, Diahhroea, tinnitus,

jitteriness, hyperreflexia, irritable bladder and muscle spasm , tight ankle joints, and tremor They come in waves and then go away.
 

I have only now started to feel the brain zaps and started to have REM rebound with the odd bout of vomiting which is what I feel like I’m withdrawal from

serotonin. As much as my body hates the fluoxetine, I still get to experience the withdrawal too.

 

When did you go off cryptoheptadine? When did you stop fluoxetine? Are you taking another serotonergic?

 

What times of day do you currently take your drugs, and their dosages?

 

17 hours ago, Andie said:

it was neurology who suggested lamotrigine to get the signalling in order once I’m less serotonergic instead of using diazepam as I’m having some tremor with flashing lights. 

 

When did flashing lights start?

[Altostrata]

On 2/10/2020 at 6:00 AM, Andie said:

Just over a week has passed since dropping Pristiq.

 

Bothered by tinnitus and muscle pain. A bit sweaty. Had a few waves of dizziness this morning. 

 

Continuing to sleep very well. 

 

Still early days yet, but taking all into consideration I’m doing quite well. 

 

Since adding And switching to Prozac I’ve been able to excercise every day.

 

 

Sweating is a sign of too much serotonergic.

[Andie]

Seeing as it appears that none of my care givers Including Tox or Pharmacy know what they are doing- It Seems I will be left on my own to read what my body is feeling and ride this thing out. 
 

Splitting Pristiq retains some of the extended release properties and crushing it completely destroys it. I was not having dose dumping on broken Pristiq. I was dose dumping on the compounded version and dose dumping on upregulated highly sensitive receptors.  The extended release added to the crushed Pristiq powder only lasts 6-10 hours at most and it’s unproven whether it actually extends the release at all. I have been told over and over again that it is unsafe to crush Pristiq, especially for those who are sensitive to serotonergics. The compounded capsule was tested and the capsule and it’s contents completely disintegrated on contact with water. 

 

Yes I did have bloods and monamine work up. Which showed skeletal muscle breakdown, a

sign of serotonin syndrome plus every other symptom in the book.  We all know 24 hour catecholamine urinalysis is highly inaccurate and I had imaging for both serotonergic and andrenergic rumours. The switch from an SNRI to SSRI definitely contributed to the problem as norepinephrine was actually used to calm things down.

The flashing etc only occurred after taking Fluoxetine. 

It created a migraine type syndrome. 

 

I am on no serotonergics at all. Diazepam tds 2mg at 6am, 2pm and 9.00pm is the only thing I am taking- mostly to mitigate the serotonergic symptoms and prevent a seizure.I feel dreadful on it  I will be weaned off when more stable. The  lamotrigine was considered as a way to mitigate any seizure activity.

 

Cryptoheptadine was stopped in April and Fluoxetine stopped at the end of March. Everything was stopped to allow my brain to heal without being ping ponged around and get a true sense of where I was neurologically and haemodynamically. 

 

My case is not that complicated. I’ve only ever been on one drug until Fluoxetine. I know Pristiq is serotonergic and it was the serotonergic properties that were causing the most problems. My Doctor wanted me OFF but Also wanted to blunt the withdrawal. 

 

 I tapered off slowly over many years

until I could no longer take the compounded Pristiq. It was either drop it all together or try the switch with fluoxetine as its also a weak SNRI. I’ve not taken any other psychotropic drugs until it was necessary to save my life from the serotonin syndrome. I do not drink or smoke and have always taken any medication as per doctors orders. 
 

Perhaps my case Is too complicated for this forum. Thanks for all your help. I wouldn’t wish what has happened to me on my worse enemy. 

 

 

 

 

 

 

 

 

 

[ChessieCat]

Hi Andie,

 

Would you mind telling us how old you are please?  Thanks.

[Andie]

Hi Chessie 

 

Mid 30s. Not menopausal or perimenopausal. No thyroid issues. That was all cleared. 

 

 

 

 

 

 

 

 

 

[ChessieCat]

Thanks.  I'm glad that those things were checked.

 

I'm just curious.  When you were having issues with Pristiq dosing did you ever consider switching over to venlafaxine?

[ChessieCat]

I've just checked back through your topic and found that you did try Effexor.

[Andie]

Yes My doctor tried as a first option it way back at the beginning and I immediately had muscle spasms and insomnia and a lot of the symptoms I have now. I became very agitated. It was after this reaction that the compounding was suggested. But yes, Effexor switch was the first go to. 
 

I think the dose was just too low. I went from 50mg Pristiq to 75mg Effexor. The switch over amount was way too low. We didn’t go to 150mg as he was concerned it would be too much. 

 

 

 

[Altostrata]

Hello, @Andie, how are you?