ChristopherC: Super Long Prozac Taper, But Still......

[ChristopherC]

New to this group. Im healthy 53 year old male. I am extremely chemically sensitive to medication and have experienced tapers to get off medication before. I took Prozac for 6-7 years and started an extremely slow & long taper using a trusted compounding pharmacist of which I finally had my last dose 10 months ago. Rarely had any symptoms after cuts (only some GI issues) but occasionally had slight anxiety/depression/blurred vision/etc. Its been 9 mths since my last dose and I'll be damned I'm getting very bad psych symptoms that are becoming reoccurring (a few the other day, a lot two days ago, several today, etc). I've read Dr. Joseph Glennmullen's book on tapering and, if this doesn't just stop, I believe I'm gonna have to get back on my last dose or something close to it and taper off even more slowly over a much longer time. Thoughts?

 

Prozac's half life was supp to make this whole thing easier but Im starting to believe it just delayed any w/d symptoms from showing I made too big of cuts and did it too fast for someone that doesnt metabolize medication well. Its almost like a delayed fuse. Any advice other than 1) wait and see if it all passes or 2) get back on my last dose or close to it and taper even more slowly over a long time?

Edited June 22, 2023 by manymoretodays
name to topic title

[Altostrata]

Welcome, @ChristopherC

 

On 6/22/2023 at 1:06 AM, ChristopherC said:

Rarely had any symptoms after cuts (only some GI issues) but occasionally had slight anxiety/depression/blurred vision/etc. Its been 9 mths since my last dose and I'll be damned I'm getting very bad psych symptoms that are becoming reoccurring (a few the other day, a lot two days ago, several today, etc).

 

Please explain more about the withdrawal symptoms you got while tapering Prozac. Did they also occur after your last dose?

 

What are the psych symptoms?

[ChristopherC]

Thanks for getting back to me. The wd symptoms that I have are pretty much textbook – GI issues, jaw pain, brain zaps, blurred vision, fatigue, depression, anxiety, etc. I incorrectly, but then correctly, withdrew from Effexor about 15 years ago and they’re almost identical. The strange thing this time was as I was tapering (maybe not at 10% but at 20-30% cuts) my symptoms were very very mild, but then about seven or eight months after my last dose, they started progressively getting worse and worse to the point that they’ve now unbearable. I think it has something to do with me being extremely Rx sensitive/poor metabolizer of these drugs and the extremely long half-life of Prozac. 

[Altostrata]

What we have seen is that mild withdrawal symptoms can progressively get worse.

 

How long did you taper?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[ChristopherC]

My mild w/d symptoms got progressively worse and worse were kinda a delayed fuse that exploded after 6-8ths. I tapered for almost a couple years but the cuts I made averaged 35% each time which I've been told are way to big for a chemically sensitive person (need to be 10% with 5% at the end). I should have known I had a problem when, during the taper I had w/d side effects that rather than go back up to the last dose, I just stayed on the med for an extra month before making another cut...it all just compounded.

[Altostrata]

Yes, when you get withdrawal symptoms while tapering and continue to taper, the withdrawal problem tends to get worse.

 

When did you take your last dose of fluoxetine? Please put this in your signature.

 

How has your symptom pattern changed in the last month?

[ChristopherC]

My last dose was about 6-7 mths ago..I'll put that in my signature. My symptoms on the last few cuts started with mostly physical symptoms (ie diarrhea, jaw pain, blurred vision, etc) but as of a few weeks ago those continued but the pattern added new symptoms (ie flu like symptoms, achy, dizziness, terrible headaches, anxiety/depression, hyperventalating + chest pains, etc). These new symptoms are identical to what I experiences when I tapered really quick off Effexor 15yrs ago and cold turkey'd Ativan 8 years ago. 

[Altostrata]

@ChristopherC they are similar because they are classic withdrawal symptoms.

 

How has your symptom pattern changed in the last month?

[ChristopherC]

The pattern has become steady with really bad symptoms starting about two weeeks ago….worsening every few days….maybe one good day and then two horrible days (when I say horrible I mean absolutely intolerable). I consulted with a WD expert named Dr Stuart Shipko who recommended I get back on the medication to stabilize and then eventually try to taper at 5% or 10%…Im praying the reinstatement works as having these symptoms for any protracted period would be impossible for any human to deal with. 
PS I didn’t realized who you are…was just reading your Sage Journal article…God bless you for what you’ve been through and how you’ve helped people

[Altostrata]

Thank you.

 

Since you went off fluoxetine at such a low dose, you might consider reinstatement of perhaps 1mg, no need to go back too the beginning. A liquid is the best way to take a small dose, explained in Tips for tapering off fluoxetine (Prozac)

What is withdrawal syndrome? 
 
About reinstating and stabilizing to reduce withdrawal symptoms 
 
The Windows and Waves Pattern of Stabilization

 

[ChristopherC]

@Altostrata unfortunately my symptoms were so severe, I went back to 5mg to start all over again as of last week. Only problem is its not really working....my WD symptoms for the 5 days since I've gotten back on the full dose have continued to be severe (like unbearable). Weird thing is I've had some good days only to be met with a terrible day the next. How long does it normally take for reinstatement to start working? My doctors have told me a week to several weeks at the earliest. I was also told by Dr Shipko that if 5mg doesnt work, go to 10mg but if that doesnt work....just get off the drug entirely. This kinda terrifies me as riding this out would be impossible unless its gonna go away in a month or two. Ive got two good doctors that understand/believe in WD + how to resolve it...but the plan here just doesnt seem to be working...and Im scarred.

[Altostrata]

Fluoxetine will ramp up over several weeks. You haven't gotten to 5mg steady-state yet. I would not be anxious to overshoot. It could be that over time, you'll find 5mg too stimulating.

 

Withdrawal symptoms typically follow the irrregular Windows and Waves Pattern of Stabilization

 

Please let us know how you're doing. 

[ChristopherC]

@Altostrata Thanks. Understood on the ramp up over several weeks and not getting to 5mg steady-state yet (along with not being anxious to overshoot). Is it normal to have reinstatement be as rough as withdrawal? Ive had several good days but a lot of bad ones (some really bad). It will be two weeks later this week. 

[Altostrata]

How many days have you been taking 5mg? How has your symptom pattern changed since you reinstated 5mg? 

[ChristopherC]

@Altostrata Its been 10 days...My symptoms before getting back on the drug were extreme (scale of 1-10...about an "11") with physical symptoms so bad I could barely stand & breath normally. Now my symptoms are more manageable on the bad days (scale of 1-10...about an "8" ) but also had had several good days (scale of 1-10...about a "1 or 2"). Its just weird that I've had three tough days in a row which make me question it all...thought things were progressing in the right direction as to reinstatement but maybe there is no normal progression pattern and I just need to give it 2-3 full weeks? Im committed to giving reinstatement a good 2-3 weeks to see if it works...unless all the solid advice from you + my doctors makes sense to do something different. 

[Altostrata]

It's only been 10 days. Please be patient, reinstatement appears to be working. We do not expect immediate resolution.

 

You may experience The Windows and Waves Pattern of Stabilization for weeks or months more.

 

Please let us know how you're doing. 

 

[ChristopherC]

Will do…your the best.

[Altostrata]

Hello, @ChristopherC How are you doing?

[ChristopherC]

@Altostrata Just sent a PM. My symptoms have seemed to have gotten worse this week. It has been 14 days since reinstating 5mg. My symptoms before getting back on the drug were manageable at times but also at times extreme (scale of 1-10...about an "11") with physical symptoms so bad I could barely stand & breath. During the last 14 days, I have had a few moderate days (scale of 1-10..about a "6"), about 3-4 good days (scale of 1-10...about "2) but in the last week they have gone back to mostly terrible (scale of 1-10...about a "9") and now back extreme (scale of 1-10...about an "11") where I can barely breath, stand up, have pounding heart palpitations, and have choking anxiety. On some nights I get slight windows in the evening but not much relief:

1. Could reinstatement at 5mg be making things worse (ie SSRI gets worse before better...I experienced that getting on them once)?

2. My Dr. feels that I need to give it 4+ weeks....but he also said I should see things get somewhat better vs worse over the 4 week period?

3. I had a very knowledgeable pharma person tell me fluoxetine can take a very long to get to "steady state" as did you. 

[Altostrata]

What times o'clock do you take your drugs, with their dosages?

 

What times of day are these symptoms worse, when are they better?

[ChristopherC]

• Take 5mg Fluoxetine 7am and take .625 Amitriplyine at 9pm
• The mornings are pretty tolerable, but around noon-late afternoon-early evening they are unbearable, and then evening/night they become better. I am sleeping from 10pm-5am which is relief.

[Altostrata]

Have you always taken 0.625mg amitriptyline?

 

Because of fluoxetine's long half-life, it can take several weeks to feel the full effect. Peak plasma is reached in 6-8 hours. If you take it at 7 a.m., drug plasma level would steadily increase until peak plasma about 1 p.m.-3 p.m. (there's individual variability). The drug level is highest in your bloodstream then.

 

It sounds to me like the 5mg reinstatement is too high for you and causes symptoms of activation. We often see this with fluoxetine, because it has such a long build. You've only been taking it a couple of weeks. If I were you, I'd reduce to 2.5mg.

 

The average blood level of the drug should slowly go down over the next few weeks, until you're at 2.5mg steady-state. Adverse effects should also gradually alleviate.

 

Please let us know how you're doing. 

[Addax]

@ChristopherC, I am sorry you are feeling so badly. I’m glad you found this sight, and you are in the best hands with Alto.
 

I am just jumping in the give first hand experience on reinstating Fluoxetine. I experienced horrific withdrawal symptoms several years ago and ended up reinstating. Granted, I was panicked and reinstated to too high a dose, but it was rough for a few weeks before I finally felt stable and “normal” again. Maybe 6 or more weeks with some lingering stuff got a short period beyond that. During that time I was so caught up in feeling badly that I didn’t notice the small improvements along the way. It really wasn’t until I looked back that I realized there were signs of improvement before I found myself feeling stable.  
 

I am very sensitive to cuts right now, so my plan when I get to 1.0mg, is to continue with 5 - 10% cuts even then, if not smaller. Although, it will be awhile before I’m there.

 

 

[ChristopherC]

@Addax Thanks so much for your message and reassuring story. Its been a little over 2 weeks for my Fluoxetine reinstatement and, yes I've had some progress that I have to admit. This second week was rough but the last 2 days have been good with one day being great. Today was mostly good but hit a wave this afternoon - YTD how bad but it seems kinda manageable ( I need to be sure not to hop on SA when waves hit vs when windows hit...I had a great window 1/2 of Friday and all day yesterday). My guess is its gonna be like you said 1) 4-6 weeks with waves but hopefully progress in the right direction. I spoke with a very knowledgeable Rx person I know that said Fluoxetine/Prozac can take a very long time to hit steady-state. Im also trying to work with @Altostrata on poss changing my does as it may be too high (5mg to 2.5mg). 

[ChristopherC]

@Altostrata Thanks again to your help w/ all this.

 

Yes, I've been on Amitriplyine .625mg for 12+ years for a GI condition that a gastro Dr put me on (if I take one more milligram the side effects are just too much). I took 15 rounds of antibotics over 2yrs due to parasite in my stomach from Mexico in '10 and I ended up in '17 having a Fecal Microbiotic Transplant from doctor in London. That totally resolved my GI condition (and my life) almost immediately. Just have been too scared to start getting off the Amitriplyine yet. 

 

Per my email above to @Addax the last few days have been better

 

The reason I restarted the Fluoxetine 5mg (vs something like 2.5mg) was that it was close to my original dose and I wasn't sure where I messed up on my recent taper, meaning I don't know where the "damage" started to occur & compound as I just kept cutting and cutting even though I had symptoms. It wasn't until the drug totally and finally left my system (genetic testing shows me as a slow metabolizer for Fluoextine & Amitriplyine) when all hell broke loose and symptoms became intolerable. Here was my taper schedule:

Drug	Dose	% Cut
Fluoxetine	5.60
Fluoxetine	4.80	14%
Fluoxetine	4.00	16%
Fluoxetine	3.20	20%
Fluoxetine	2.40	25%
Fluoxetine	1.60	33%
Fluoxetine	0.80	50%
Fluoxetine	0.40	50%
Fluoxetine	0.10	75%
Fluoxetine	0.20	50%

 

If I had to guess, the "damage" started around 3.2mg or 2.5mg. Not knowing, I just thought I'd start all over again at 5mg. I'm doing a compound pharmacy so it would take 2-3 days to get a 2.5mg script unless I put the 5mg in water/used a syringe to get 2.5mg. I've been reading a lot about the importance of going super slow on the lower does (per Dr. Mark Horowitz) which as you can see I DID NOT do...I just went bigger at low does when I should have gone much, much smaller. Question for you:

 

- I'm a little scared of changing as I've been on 5mg for 2+ weeks as I'm kinda making some postive progress the last few days...Will I have WD symptoms cutting by 50% (ie 5mg to 2.5mg)? Or has it just been 2 weeks and highly unlikely? I trust you and your experience.

[Addax]

Although it’s been bumpy, I’m glad to read you’ve noticed some improvement this early in.  I understand your trepidation about going to 2.5.  Change is scary when you’ve experienced how dark things can get.  I still get anticipatory anxiety after every cut I make. Luckily, I haven’t fallen off a proverbial cliff since the time before my reinstatement many years ago.  I credit much smaller cuts and longer periods of holding. 
 

I know Alto will respond to your post and questions, so I won’t comment on those, other than to say, as Alto probably will, that regardless of how likely or unlikely a response to a dose adjustment is, in withdrawal there are no guarantees. The good thing is that the staff here have years of experience and knowledge to inform their guidance.

[ChristopherC]

@Addax let see what she says…I’m having a terrible wave today that doesn’t want to quit….got to tough it out

[ChristopherC]

@Altostrata Still want your reply to my above message from yesterday but want to add this new news/intel:

• I have noticed my symptoms are good in early am/evening/& throughout the night...they are only typically bad mid day (6-8 hrs after I've taken my 5mg dose). New news: this am, I had to travel and took my 5mg dose several hours earlier and I'll be damned if my symptoms started (and they were bad) also several hours earlier...earlier than I've seen this in this entire process. I don't want to say "aha!" but this may be good intel as we figure out if a move to 2.5mg would may stop any symptoms of activation that seem to be common with Fluoxetine due to its long build. Maybe my blood level of the drug is just too high and needs to go down. Still want your take on my questions above (ie what level did "damage" on my taper occur, will I suffer from WD from 5mg to 2.5mg. etc).

CC'ing @Addax

[Addax]

The administrators (Like Alto) and moderators on this site are incredibly busy, so it can take a while before they can respond. 

Just a quick FYI in regard to the timing of when you take fluoxetine and how you’re feeling. Fluoxetine reaches peak plasma levels between 6-8 hours after taking it.  The rise a fall of the plasma concentration doesn’t affect everyone, but when it does, it can be in either direction: Stimulating (in an uncomfortable sense) or cause fatigue. It’s mostly known to be stimulating/activating for some people, particularly during reinstatement. So when you take it can matter, as you’ve identified. I don’t have first hand experience of how timing affects how I feel because I have only ever taken it in the morning. But when I reinstated I did feel anxious and jittery sometimes. Unfortunately, I didn’t really pay attention to when it was better or worse, other than my symptoms seemed to follow my circadian rhythm… worse in the morning and become less intense and uncomfortable by the evening.  
 

It’s great that you may have identified a pattern.  That can go a long way in helping you to manage around symptoms. I’m not sure whether it would interfere with your sleep, but perhaps you could time it so you sleep through the worst hours. Of course, there is some risk being that many people identifying it as stimulating/activating.  The activation is one of the reasons only a very small reinstatement is suggested.  As for whether you should cut back to 2.5, Alto is better equipped to respond to that. I’m not currently an active moderator.
 

 

[FindRest]

9 hours ago, ChristopherC said:

I have noticed my symptoms are good in early am/evening/& throughout the night...they are only typically bad mid day (6-8 hrs after I've taken my 5mg dose). New news: this am, I had to travel and took my 5mg dose several hours earlier and I'll be damned if my symptoms started (and they were bad) also several hours earlier...earlier than I've seen this in this entire process. I don't want to say "aha!" but this may be good intel as we figure out if a move to 2.5mg would may stop any symptoms of activation that seem to be common with Fluoxetine due to its long build. Maybe my blood level of the drug is just too high and needs to go down. Still want your take on my questions above

 

 

On 7/14/2023 at 5:22 PM, Altostrata said:

It sounds to me like the 5mg reinstatement is too high for you and causes symptoms of activation. We often see this with fluoxetine, because it has such a long build. You've only been taking it a couple of weeks. If I were you, I'd reduce to 2.5mg.

As Alto pointed out a number of days ago, fluoxetine reaches its peak 6-8 hours after it’s ingested. This correlates with your increase in symptoms. Is there a reason you did not reduce your dose to 2.5 as she suggested? The longer you wait to make the change, the higher the chances for increased symptoms.

 

9 hours ago, ChristopherC said:

will I suffer from WD from 5mg to 2.5mg.

There is no way for any of us to know for sure what the results may be. Alto wouldn’t have suggested it unless she thought it was a good idea based on her experience helping many others in the same situation. I think it’s to be expected that you will temporarily notice some symptoms after that reduction, with the hope being that once they settle your overall symptom load will be less than what you are experiencing now. 
 

Note: It’s important to take your dose at the same time every day.
 

Edited July 18, 2023 by FindRest

[ChristopherC]

@FindRest Thanks. I went ahead and made the move to 2.5mg this morning based off research that I’ve done and more importantly Alto’s suggestion. I guess I’m just being overly cautious because I’ve had some good days on 5mg but mostly bad. Yesterdays symptoms were crushing so I and my family felt something needed to change. 

[Altostrata]

Good to hear you made the reduction to 2.5mg, @ChristopherC. How do you feel now?

[ChristopherC]

@Altostrata The first 4-5 days were pretty good...better than average...but today has been kinda rough. This is kinda what I thought might happen/was told...That I should expect some (hopefully) temporary symptoms after the reduction to 2.5mg but doing so with the plan that once they settle, my overall symptom load will be less than what I was experiencing over the last few weeks (at 5mg). Thanks for checking in...means alot...I'll keep you posted. 

[Altostrata]

Please describe this rough patch, thanks.

[ChristopherC]

@Altostrata had a good or much better week after the switch to 2.5m but today I noticed a day long very "squirrelly" feeling, slight anxiety, and very fatigued. I did hit the gym for the first time in 30 days and kinda pushed myself hard (may not have been smart). Symptoms I had were nothing as bad as a few weeks ago. Funny...when ever I increase or decrease medication, I get a ringing in my ears that last about 15-20 seconds, and then goes away. 

[ChristopherC]

@Altostrata Just an update...Reduced from 5mg to 2.5mg last Tues and with long half life/my slow metabolism, the symptoms started hitting this past weekend. Sat & Sun were very rough almost all day (ie body/head feel "jammed up", anxiety, cloudy head, fatigue, shortness of breath, bad GI, running nose/phelgm, etc). Last night I had a nice window/break and I have slept better the last two nights since all this started (even had a dream last night). Not sure what all of this means as to progress but I'm still convinced we got to give it some time to let the reduction settle and get to a 2.5mg steady state don't you think?