commandolord - Intro

[commandolord]

Hello,

 

I am here because I am looking for more information on Invega, and I am thinking about the future; of when I may have to come off Invega completely.

 

I was diagnosed with paranoid schizophrenia about 12 years ago.

 

I have been on Invega Sustenna for abour 3-4 years now. Maybe longer. I was previously on Zyprexa, Abilify, Geodon, Prolixin, and Haldol.

Within the 3-4 years I was on Sustenna, I switched to Trinza ~819 mg, and things were okay, but then I decided to try Cogentin to treat the side effects. I found Cogentin to be helpful, somewhat. Things were going well, so I asked my doctor to reduce my Trinza, and they did. With that, I increased the dosage of Cogentin from 1 mg to 3 mg's once in the morning because I felt the most relief then. That was when I started to hallucinate. I made a call to the crisis hotline one night, and I ended up in the emergency room. It was not a good ordeal. I was delusional the entire time and a security guard threatened to break my arm, along with some other disturbing experiences. I got out about a week later, after they added 9 mg of Paliperidone ER. I was still delusional. I was delusional the entire stay at the emergency room and the inpatient unit. My outpatient doctor believed I needed the extra 9 mg's so I stayed on it. I experienced severe akathisia. The Cogentin was not enough. So, I continued to take 3 mg of Cogentin in the AM, and experimented with higher dosages, up to 4 mg in the AM and 2 mg at noon. I was hallucinating and delusional. Also, my Trinza was increased to the ~819 mg dosage. Nothing helped my delusions and hallucinations.

 

I don't know what caused the hallucinations and delusions, but my doctors think it had to do with the dosage decrease. I think it had to do with the experimenting with Cogentin. They say Cogentin doesn't cause hallucinations. I read online reports that say otherwise, so I don't know what to believe. Today, am tapering off the Cogentin. I am down to 1 mg a day in the AM. I successfully tapered off the 9 mg of Paliperidone ER and I am at the 234 mg dose, because the Trinza wasn't doing the job, so my doctor decided to try Sustenna again. I have been on the 234 mg dose for 5-6 months. One problem though, I get delusional and hallucinate one week before my injection is due. That is what I would like to find out about. Is my injection not lasting long enough? Or is this a problem with antipsychotics and they eventually lose efficacy?

 

As far as treating my akathisia goes, I have found success with L-Theanine. I take 200 mg in the AM, but it gives me the runs, so I may reduce the dosage. L-Theanine has been a huge blessing though. It has helped with the anhedonia, but I don't think it does much for the tremors because I still experience them from time to time. For the tremors, I take magnesium glycinate. 300 mg in the AM and 100 mg at noon. I have seen people say that L-Theanine was not helpful to them at all, so please, be cautious when taking L-Theanine. Try a low dose at first, if you are considering it. That is what I did. I found it helpful, but not helpful enough.

 

tl;dr:

I am experiencing relapse symptoms a week before my injection is due. Is my injection not lasting long enough? Or is this a problem with antipsychotics and they eventually lose efficacy?

[Erimus]

Hello, and welcome to Surviving Antidepressants. We are a peer support forum to assist in tapering off psychiatric drugs safely, or recovering from psychiatric drug withdrawal.

 

This topic is for anything relating to you, and any questions you have. Please do not start another topic.

 

We recommend tapering by no more than 10% of your CURRENT dose each month, to limit withdrawal symptoms. E.g. 10mg --> 9mg --> 8.1mg --> 7.29mg

 

All the answers you are looking for regarding tapering and antidepressant withdrawal are on this site. Please search around and continue to read as much as you can manage. Use the site search function to search for specific words or phrases, such as drugs or symptoms.

 

Here are a few of the most useful links:

 

Important topics in the Tapering forum and FAQ

 

Micro tapering

 

Why taper by 10% of my dosage?

 

Taking multiple psych drugs? Which drug to taper first?

 

How to make a liquid from tablets or capsules

 

We only recommend two supplements. Omega 3 Fish Oil and Magnesium. Both should be introduced separately and increased slowly.

 

Regards

Erimus

[Erimus]

Please read Tips for tapering off paliperidone (Invega)  in full.

[commandolord]

I have a question, does paliperidone/invega decrease grey matter of the brain? Because according to the drug facts, it promotes neurogenesis.

[Erimus]

2 hours ago, commandolord said:

I have a question, does paliperidone/invega decrease grey matter of the brain? Because according to the drug facts, it promotes neurogenesis.

No idea.

[commandolord]

I was diagnosed about 10-12 years ago.

 

Here is my story of how I was diagnosed,

 

I used to use a lot of marijuana for a bit of time in my early 20's. I would use an ounce of weed in about a week's time. I wasn't smoking it though. I was vaporizing it, which results in using upwards of 80% of the THC in the marijuana as opposed to 20% when it's being smoked. I would use it for a week, and then, because I ran out, I would not use it for a while. I remember hallucinating while high. One night I also left my home and went out and I climbed the roof top of a building just for fun. I even ran into traffic.

 

One day, I decided I was going to walk to the beach. I wasn't high at the time. I followed the sun east. I live on the east coast, about an hour to 2 hour drive to the shore, so I thought it would be easy. I don't remember how long it took, exactly, but I ended up at a beach. When I was there at the beach, I had an intrusive thought. I thought that if I walked into the water, I was going to drown. So, I decided not to. Now, the beach was over a small hill, and the water was at the bottom of the hill. When I turned around to go back home, I saw all these cars stopped in their tracks. I couldn't see their tires over the hill, but I thought the world had ended. I was just stopped in shock where I stood. I decided to investigate further, and when I moved forward, I saw the tires of the cars, and they were all parked. It was all just parked cars. I thought to myself, "Thank goodness. It's just parked cars."

 

On the way back home, I went exploring around a police station. I saw some graffiti on the side wall of the police station, so I decided to have a closer look. Then this woman came out of the back parking lot of the police station and stopped me. She said, "You can't be here. What are you doing? Wait here." I didn't want to run because I knew she was a cop. She called two other officers from within the station. They questioned me. Asking me where my father was. I answered truthfully. In that moment, I started to hallucinate. Thinking that my dad was a drug dealer and had these racing thoughts about it. One of the police officers called an ambulance and I was taken to the hospital, where I had more hallucinations during my stay in the ER. I was diagnosed with undifferentiated schizophrenia, and I stayed in the hospital for some time, I don't remember how long, but it wasn't long. I remember telling the doctor that as soon as I got out, I was going to go to join the 1% protest. They prescribed me Haldol. That was my first bout with akathisia. I only took it during my hospital stay, and I think I experienced withdrawal symptoms.

 

I was hospitalized a few times after that, and I remember hallucinations in and outside of the hospitals. I just wonder, do I really have schizophrenia? Or did I have weed-induced psychosis and withdrawal symptoms from meds I was prescribed over the years? I am med-compliant now, but I just wonder.

[Emonda]

Hello, commandolord,

I've moved your new post back to your own thread.

 

Please keep everything relating to yourself in this thread.

 

8 hours ago, commandolord said:

I just wonder, do I really have schizophrenia? Or did I have weed-induced psychosis and withdrawal symptoms from meds I was prescribed over the years?

 

I can't comment on this, unfortunately.

 

Best wishes, Emonda

[commandolord]

I talked to my doctor about coming off Invega Sustenna 234 mg, and they want me to do one more shot for now.

 

Do you guys think I am going to have to taper off the shot? I have been on it for about 5-6 years now.

 

I am going to be on Olanzapine in the meanwhile.

[Erimus]

On 4/30/2024 at 2:05 PM, Erimus said:

Please read Tips for tapering off paliperidone (Invega)  in full.

 

[commandolord]

2 hours ago, Erimus said:

 

Yeah, I read that whole thread.

 

I am wondering if I should be able to just stop the injection, or if I should taper it with pills?

[commandolord]

https://www.educationaldoseillustrator.com/pp1m/schizophrenia/scenario/single-dose-curve-view

 

How do I read this? I tried the 234 mg deltoid and gluteal injection, and, to my understanding, Invega will be out of my system in 52 weeks?

 

So when do I start the oral dosage? Can someone help me out with this?

[commandolord]

2 hours ago, commandolord said:

https://www.educationaldoseillustrator.com/pp1m/schizophrenia/scenario/single-dose-curve-view

 

How do I read this? I tried the 234 mg deltoid and gluteal injection, and, to my understanding, Invega will be out of my system in 52 weeks?

 

So when do I start the oral dosage? Can someone help me out with this?

Would I start a dosage of 6 or 9 mg when the month is over? But then, how would I proceed? I have read that I would need to continue on the 6 or 9 mg dosage for a month per every year I've been on Invega Sustenna. So that would be about 6 months of 6 or 9 mg's. But then what? Would I be on 7.5 mg for a month after that, or would I be on 7.5 mg for 6 months?

 

Paliperidone oral is sold in 1.5, 3, 6, and 9 mg capsules.

Someone help me out, please?

[manymoretodays]

Can you clarify on if you are currently on Zyprexa, and if so, when started and at what dose?

When did you get your last injection of Invega Sustained?  Month and day?  When do you get your next one?

Are you on mandatory treatment right now?

 

7 hours ago, commandolord said:

I have read that I would need to continue on the 6 or 9 mg dosage for a month per every year I've been on Invega Sustenna. So that would be about 6 months of 6 or 9 mg's. But then what? Would I be on 7.5 mg for a month after that, or would I be on 7.5 mg for 6 months?

Where did you read this ^

 

According to this:  https://www.drugs.com/mtm/cogentin.html 

I'm seeing side effects of confusion and hallucinations right there in the list.  Why your doctors didn't acknowledge this, I don't know.  It's also one that should, ideally be tapered according to a 10% schedule, each new tapering dose being based on the previous one.  So, it can result in WD symptoms, if tapered too quickly. 

Why taper by 10% 

 

When did you last take Cogentin? 

 

Seems to me, the best time to start some of the oral pallperidone, would be in the week just prior to when you recognize feeling delusional again after the injection.  At that point, where you feel delusional.......I think that means your level has lowered enough, and possibly too fast.    And I'd sure start low, with perhaps just a 1 mg dose, daily.   I honestly, don't know for sure though the ideal dose of the oral pallperidone for you.  But I'd rather err on the side of caution.

 

I've seen suggests, for when members are just on the injection, as to how, and when to add the oral.  But never have I seen a member come in on two AP/neuroleptics.  So that throws a kink in this all.

 

To me it's a confounding factor, are that you might be on another neuroleptic/Zyprexa already as well.  I have no idea how or if it will prevent the supersensitivity psychosis, that can occur after a too fast taper off a neuroleptic/AP.  And there is a risk when one is on more than 1 neuroleptic/AP of some harsh side effects too.

 

Are you interested in eventually being drug free?  And I wouldn't recommend going too quickly on that.  Is your doctor working with you to presently maintain on just one neuroleptic/AP? 

 

And then eventually finding the lowest possible dose that you can maintain at?  I'm hoping so.  My best guess is that they are overlapping the Zyprexa with the tail end of the Invega Sustained injection, in hopes you won't need another injection.  Is that your present take on what your doctor is attempting to do? 

 

And oh my, I'm so sorry........you've had to endure, some tough symptoms, and then some tough adverse, side effects of the drugs given as well.  

 

 

 

 

 

 

Edited May 26 by manymoretodays
more, just trying to get clarity on this members present drugs and situation

[commandolord]

10 hours ago, manymoretodays said:

Can you clarify on if you are currently on Zyprexa, and if so, when started and at what dose?

When did you get your last injection of Invega Sustained?  Month and day?  When do you get your next one?

Are you on mandatory treatment right now?

 

Where did you read this ^

 

According to this:  https://www.drugs.com/mtm/cogentin.html 

I'm seeing side effects of confusion and hallucinations right there in the list.  Why your doctors didn't acknowledge this, I don't know.  It's also one that should, ideally be tapered according to a 10% schedule, each new tapering dose being based on the previous one.  So, it can result in WD symptoms, if tapered too quickly. 

Why taper by 10% 

 

When did you last take Cogentin? 

 

Seems to me, the best time to start some of the oral pallperidone, would be in the week just prior to when you recognize feeling delusional again after the injection.  At that point, where you feel delusional.......I think that means your level has lowered enough, and possibly too fast.    And I'd sure start low, with perhaps just a 1 mg dose, daily.   I honestly, don't know for sure though the ideal dose of the oral pallperidone for you.  But I'd rather err on the side of caution.

 

I've seen suggests, for when members are just on the injection, as to how, and when to add the oral.  But never have I seen a member come in on two AP/neuroleptics.  So that throws a kink in this all.

 

To me it's a confounding factor, are that you might be on another neuroleptic/Zyprexa already as well.  I have no idea how or if it will prevent the supersensitivity psychosis, that can occur after a too fast taper off a neuroleptic/AP.  And there is a risk when one is on more than 1 neuroleptic/AP of some harsh side effects too.

 

Are you interested in eventually being drug free?  And I wouldn't recommend going too quickly on that.  Is your doctor working with you to presently maintain on just one neuroleptic/AP? 

 

And then eventually finding the lowest possible dose that you can maintain at?  I'm hoping so.  My best guess is that they are overlapping the Zyprexa with the tail end of the Invega Sustained injection, in hopes you won't need another injection.  Is that your present take on what your doctor is attempting to do? 

 

And oh my, I'm so sorry........you've had to endure, some tough symptoms, and then some tough adverse, side effects of the drugs given as well.  

 

 

 

 

 

 

I am currently on 7.5 mg of Zyprexa. I started the 7.5 mg Zyprexa 3 days ago. Before then I was on 5 mg. I had been on 5 mg for 7 days. I plan on taking the Zyprexa to manage my symptoms.

 

I got my injection on the 16th of May.

 

My doctor and I haven't really talked about getting off Invega. I am planning ahead of time. My doctor wants me to do one more shot of Invega, but I desperately want to get off of it. I guess I should wait to hear what they say the next time I see them, which is on Thursday.

Edited May 26 by manymoretodays
none

[manymoretodays]

4 hours ago, commandolord said:

I am currently on 7.5 mg of Zyprexa. I started the 7.5 mg Zyprexa 3 days ago. Before then I was on 5 mg. I had been on 5 mg for 7 days. I plan on taking the Zyprexa to manage my symptoms.

 

I got my injection on the 16th of May.

 

My doctor and I haven't really talked about getting off Invega. I am planning ahead of time. My doctor wants me to do one more shot of Invega, but I desperately want to get off of it. I guess I should wait to hear what they say the next time I see them, which is on Thursday.

Edited just now by manymoretodays

 

Hi there, and thanks for some answers to my questions.  And good to plan ahead, further educate yourself, and empower or regain control over your unique situation.

 

So thus far after the injection, have you been without any symptoms setting in, due to the lowered blood level of the Invega S?  I mean it's possible that when you get to 3 weeks out, you won't suffer any of the symptoms of the reduced dose(the injection is slowly reducing it's level during the weeks after it's given, as I think you've realized).  Any may be able to avoid another injection without going onto oral pallperidone. 

 

Unfortunately, I don't know for sure if the Zyprexa will keep the delusions at bay.  I'm hoping so.

And, with just the 10 days now of Zyprexa, it may not have resulted in the physiological dependency as yet.......possibly you could work with your doctor to do a faster taper off it........as when you go in, you'll be at just 2 weeks.  And then ask if he'll help you get settled in with the oral paliperdone or resperidone liquid. 

 

Again, those options are mentioned in the Tips for tapering off Invega(paliperdone) which was put together by the founder of this site, Altostrata, who just recently retired from site activity, after much research, and sometimes conferring with some of the other real professionals in the psych drug de-prescribing community.

 

Maybe you do have a doctor who will work with you.  I don't expect your cognition is at it's best, nor was mine while medicated and also when I did experience WD.  I found writing things down on paper to help me get my thoughts organized around different topics, really helped.  Yet even then, I did not get a lot of support from my psychiatrist prescriber, and eventually just continued to taper and get what I needed to do so from my general doctor.

 

You'll also see in the link provided to you, how a Invega Sustenna shot could be reduced at the front end, when given.  It's difficult, and hard to know if your doctor would be willing to do that.  Difficult due to premeasured doses in the syringe, with not a lot of leeway for reductions.  No clear markings on the syringe, etc.

 

As you are then essentially doing a form of cross over from one neuroleptic/AP to another.......or so I sincerely hope, versus doing dual neuroleptics/antipsychotics.........you may not need to worry too much about adding additional oral pallperidone. 

 

If I were you, I'd be looking up each drug now, that might be the follow up to you injections.  Then make an informed decision as to which one you feel might be best to singularly maintain on.  I'm not a fan of Zyprexa myself.  I felt so darn simply deadened while on it, like a walking dead person.  I wasn't on it for delusions or control of such.  I was on it as a "mood stabilizer" after too many drug changes and a uninformed quick taper threw me into some even greater mood instability than I had ever experienced as a drug virgin.  It was a pretty crazy time for me, then.

 

The delusions you've experienced at the tail end of your Invega S injections, I really think could be due to the dopamine supersensitivity setting in.  Rather than related to a fixed illness that will forever be unchanging or need medications for a lifetime.  A little more about that dopamine supersensitivity in this topic:
*Tips for tapering off Zyprexa(olanzapine)

(and then taken from that topic)

Very careful tapering is necessary when you have had psychotic symptoms. Withdrawal symptoms that look like psychosis can appear even in those who never had psychosis. If you have a prior diagnosis of psychosis, emergence of these symptoms from dopamine supersensitivity can cause you to become diagnosed as "relapsed" and re-medicated. Read Psychiatrist: Some patients are better off without antipsychotics...

That whole topic will come in handy, if at a later date you should decide to taper Zyprexa. 

 

Unfortunately all the AP's/neuroleptics have side effects, sometimes worse than the initial symptoms.  For maintenance, best to maintain on the lowest dose possible.........and then, once free of symptoms that got you started down this road, consider perhaps a slow informed taper,  for best possible all around health.

 

The Cogentin you were given was given more to counteract some of the myriad of side effects that can occur from AP's, and it sounds like you have had quite a few of those in your years trialing medications.

 

Delusions on their own, are not neccessarily a fixed condition, that will never change.  That diagnosis of "Paranoid Schizophrenia" is just the doctors putting a label on one or two symptoms, and then using mainstream treatments(mainly pharmacological) for it.  Don't label yourself.  I think for sure your prior drug use(marijuana) might have set off a chain of events in your brain and nervous system.  And at the point you presented to psychiatry, that's all they know how to do, is medicate.  And I'm sure you are still somewhat terrified of going into a state of mind that might land you back in the hospital for weeks, under lock and key.

 

Basically, I'm just wanting to give you information today and links to where you might further your education around both your symptoms before medications, and then around the medication(hopefully just one) you are choosing to maintain on.  This way you might be able to empower yourself and have give and take discussions with your prescribing doc as well, and begin to plan for the best options for yourself going forward.

 

As it seems you do have a prescriber right now who is in charge of crossing you over from Invega S. to olanzapine, best that we don't interfere with that.  As we are not professionals, just peers who have had our own journeys on these types of medications, and then tapering, and WD.......most who have wanted a better way.  Myself, I just kept getting sicker on many psychoactives, over many years and had to find a better way.

I strongly recommend you look at some of Robert Whitaker's work, his book called " Anatomy of an Epidemic" was a turning point for me , in the beginnings of my getting drug free for a better life.

Long youtube interview with him, around what is in the book-  if possible though, I'd recommend getting the book and reading the parts that apply to your current situation.

 

Also, the MadinAmerica,  the site founded by Robert Whitaker.  The link I gave you has some search results for antipsychotics there. (you may need to register to access all topics there now, if you can't afford a donation, just follow the steps to let them know that, and then you can read freely what gets posted.  Many stories/blogs of people who have had similar situations to yours, and more resources to cope.......so you don't get stuck feeling like you have to figure it all out alone.

 

Some of the links we've got here:

Chouinard, 2017 Antipsychotic- Induced Dopamine Supersensitivity Psychosis

Psychosis during withdrawal, Anyone?

Hallucinations

 

There's one more topic here, I'm going to have to search more for too, and will add it in when I find it. 

 

You can utilize Drugs.com to learn more about any medication and many of the possible adverse effects.  Also to check for interactions prior to initiating additional drugs.  I'd suggest you do that with paliperdone and Zyprexa.

Drugs.com  you'll see a top box where you can read more about each drug singularly too

Medscape is another online site that you can do the same.

As well as rxisk.org

 

Gosh, I know that's alot, above.  Take it at your own pace.  And it would be really helpful if you could just adapt your signature a bit more.  I'll give you an example of how you might do so, and then the link that will take you right back to it to edit or update.

 

What you've got now, and I'll just edit in this copy, in black, changes that would make it more helpful for us to see at a glance.

 

April 27, 2024 I am considering tapering off of Invega Sustenna, depending on the information I may find here about Invega. Definitely don't want to be on Invega if I don't need it.

 

Diagnosis: Paranoid Schizophrenic  You can leave this out, it's in your initial posts, not needed in the signature that appears below each of your posts

 

History:

lead off here with the year, month-write out the month if you remember, and day if remembered

?2020-2024 May Invega Sustenna 234 mg injections every month, last given  May 16- 3-4 years - Suffering from akathisia, anhedonia, tremors, blurred vision  adverse effects

Note the date you began Zyprexa:

2024, May 16- started Zyprexa 5 mg, May 23- 7.5 mg

 

Can you summarize Cogentin usage, and taper information too.  Just lead with the year or years of use, then dates of changes, and date you stopped it

 

Previous meds:

• again with each of these bulleted items, lead off with the year and month( if remembered), and just briefly adverse effects after
• Invega Trinza - about 1 year - akathisia, anhedonia, tremors, blurred vision
• Zyprexa - 1 year - Weight gain, lethargy
• Abilify - less than a year - akathisia
• Geodon - less than a year - no known side effects
• Prolixin - one month - extreme akathisia, muscle stiffness
• Haldol - a few weeks - akathisia

 

AccountSettings/edits/updates

 

Do hit the Save button on the bottom left when you are done, and update again when new changes are made.  Thank you.

 

commandolord, I sure hope some of this is helpful in your journey.  I just wish to enlighten you that there may be another way, eventually for you, than with long term medication.  So explore the links here, and look around over at MadInAmerica.  Don't make drastic changes to medications in the meantime, as we are really all about safe tapering practices and assisting with coping with WD as well.  We are not about medication management so to speak, which is where you are at right now, and you do, I so hope have a good doctor who will listen and help.  My hope is that the adverse effects of the medications you have been on will be self limited, and may resolve quicker rather than more slowly.  You may also be suffering from some of the WD effects of Cogentin too.  I still don't know how long ago you came off it completely.

 

And where did you find the recommend of doses of paliperdone oral, to be used as the Invega Sustana wears off and ongoing for maintenance?  I've only been able to find the manufacturer's recommends for switching from oral to Injection. 

 

And again, I'd rather not ever see anyone maintained on 2 neuroleptics/antipsychotics, if at all possible. 

 

Wishing you the best for now, and hopefully we can help more should you decide to taper whatever medication you decide to maintain on after your Invega Sustana injections are done.  Meantime, do pop in from time to time and update us as to how you are doing and on what medication or medications.

 

L, P, H, and G,

mmt

 

 

 

 

Edited May 26 by manymoretodays

[manymoretodays]

Hey there, if you are still checking in.  Here's another topic I wanted to share with you......with some alternatives to medications, for coping with delusions and such:

Alternatives for psychotic outbreaks

(you'll have to be signed in to access, as it is in a forum for members only)

[commandolord]

My doctor has agreed to stop Invega Sustenna. The last shot I took was a dosage of 156 mg, and that was almost 4 weeks ago. I asked for paliperidone in capsule form (extended release) and the doctor agreed to give me capsules of 6 mg.

 

Is this a step in the right direction? I am worried about withdrawal symptoms being so bad that I get hospitalized.