gentlygo: Invega - making commitment to 10% reductions slowly

[gentlygo]

Hi,

 

I hope my signature follows this message. I am going to try again, but this time learn everything I can, and figure a way to reduce by 10% and keep talking to my psychiatrist and get him to support me.

Even though he is against it and thinks I should be on an anti-psychotic for life. I don't know how to reduce 10% off of a 3mg dose of Invega. I don't know how to titrate. I don't understand how to work with a compounding pharmacy. All of it seems overwhelming but I want to try and make a definite commitment to learning. My goal is to reduce by 10% every 3 months and do it over 2.5 years.

 

Nice to meet everyone. Thanks for reading my intro.

 

gentlygo

[Petunia]

Welcome gentlygo,

Thank you for posting and for adding your signature, its showing up fine. I'm sorry your psychiatrist isn't being very supportive of your wish to be drug free. Many people who have experienced episodes of psychosis have fully recovered without medications and are living functional and successful lives.

 

I'd highly recommend reading Anatomy of an Epidemic by Robert Whitaker. Psych meds can cause harmful side effects and long term, they can worsen health, increasing the risk of other illnesses. In my opinion they  should only be used for short times and very cautiously, if at all.

 

Other resources you may find helpful are:

 

The Icarus Project   Hearing Voices Network   Beyond Meds   Bipolar or Waking Up

 

Here are our tips for tapering off Invega:

 

Tips for tapering off Invega (paliperidone)

 

Unfortunately, it looks like so far, there isn't a proven way of tapering by cutting up the extended release tablets, you may have to experiment. The other alternative is to switch to risperidone liquid, please see the topic for more details about this.

 

Perhaps you could look for a new doctor who will support your goal of becoming drug free.

 

Others will probably have more ideas, I'm glad you joined us, you will find a lot of friendly help and support here.

 

Petunia.

[gentlygo]

Hi Petunia,

 

Thanks so much! I am waiting for Mr. Whitaker's book from the library to re-read it. And I want to thoroughly read Beyond Meds and learn! I think my first step is to re-book an appointment my pdoc cancelled, and there ask to be put on risperidone liquid form. Crossing fingers - I have told him that my plan is 10% withdrawal over 2+ years and that I don't want to be on anti-psychotics for life/much longer. Maybe I will also book an appointment with my family doctor to also discuss, as a back up. Thank you for your encouraging words it is just what I needed to hear and to find a place of support and people who have had success through their efforts and are doing it carefully.

 

gentlygo

[Fresh]

Hi gentlygo , welcome to the site.

 

You may have found these already , but try reading "Why Taper By 10%" and "What is Withdrawal" in the Tapering section.

No need to feel overwhelmed any longer . . . you're in exactly the right place.

 

Best wishes ,  Fresh

[gentlygo]

Hi Fresh,

 

Thank you. That is so good to hear. I've had to swim upstream to find this place.  Today was a victory day. I picked up Dr. Breggin's Book

Your Drug May Be Your Problem, want to read it once, then take notes. I also saw my pdoc - I think me being level-headed and resolute

about tapering is helping and being patient is helping. I asked to be switched to Risperidone liquid from Invega 3 mg. and will start this form

in two days. He is not supportive but he is not uncooperatively unsupportive either.

I've decided to first taper off caffeine/coffee and to work on my diet, start walking. I promised him I would not start tapering until he comes

back in 3 months. I need to work on lifestyle adaptations and more support and taking responsibility for how I was when I withdrew unsuccessfully before too fast.

 

I think when I am ready - I have to do a schedule - when I get my first dose, thinking go down 10% every 3 months because I have been on anti-psychotics for 10 years.

 

I don't know about finding a new pdoc - I think I want to work with him go slow - I have a trusting relationship.

 

What do you guys think?

[gentlygo]

I have just picked up my prescription for Risperidone liquid. See how it affects my body. I plan on first taper August 15th of 10% if all goes well.

 

gentlygo

[Altostrata]

Hello, gentlygo.

 

If you feel you can work with your doctor, by all means continue to do so.

 

Please let us know how you do with risperidone liquid.

[gentlygo]

Hi Altostrata,

 

Thank you for asking! The transition has gone pretty smoothly, it leaves me groggy/sleepy though. My psychiatrist is out of the city for 3 months so I feel like I have some freedom. He didn't want me to make a taper until I came home, but I have done so already.  I went down from 3ml to 2.75 about 2 weeks ago, and I am still sleepy. I will stay on this dose for another 2 weeks and then make another taper. I am sick of being stuck in one emotion and a 'fixed setting' brain.

 

I am wondering now about making up my schedule for tapering. Since I have been on antipsychotics for 10 years I understand that you need one month of tapering for every year on? What I am thinking of doing now (after I wrote out how long a 10% taper is going every 2 months) is going down 10% every six weeks. I understand that it's 10% of the remaining dose each time. 

 

Does what I am planning seem like a reasonable plan?

 

gentlygo

[Altostrata]

If you feel comfortable reducing by 10% every 6 weeks, that's fine.

 

Do you take your dose in the morning? You may wish to gradually move it toward the evening, an hour or two at a time.

[gentlygo]

No. I take it in the evening before bed. Maybe I will compromise and do it every 7 weeks. Better slow and steady. And get there this time.

[Altostrata]

If you've had symptoms labeled as "psychotic," you will want to go extra-slow to avoid triggering them with withdrawal symptoms.

[gentlygo]

Ok. I wonder if it is possible to go down by 5% and not be triggered? Maybe safe than sorry this time. And coming off slowly is what I wanted to do in the first place. Hold onto things and come off slow and steady. I would rather look myself in the mirror and be proud of myself than feel horrible I triggered myself over again. Maybe 5% every eight weeks. Give my body lots of time to adjust each time. Thanks Altostrata. Thanks very much. I will set up my schedule like that. Better slow and steady and not as many symptoms and eventually come off without mishaps.

[Altostrata]

Read this: Psychiatrist: Some patients are better off without antipsychotics...

 

I'm proud to say Dr. Steingard refined her tapering strategies with information from me.

[gentlygo]

Wow, it is something that a psychiatrist actually listens and takes suggestions! The article pointed out we don't know who is in what group, those who do well coming off meds and returning to work and wellness, and those who don't do well. I am at my next taper, at 2.50 ml. I plan to taper down to 2.25 at the end of September. No side effects so far. If I do find that are side effects, is the right thing to go back up to the previous dose, i.e. if I find I feel a little psychotic at 2.25, do I go back on 2.50? Thank you for any suggestions. 

[Altostrata]

Better to avoid the symptoms by even slower tapering. But yes, if you feel "a little psychotic," it might be a good idea to updose a bit and hold for a good while at that dosage.

[gentlygo]

Ok. So you are saying if I go uber-slow it might be possible to avoid the symptoms entirely? It would be so worth it to eventually come off and not do any harm by having another episode. Ok. Thanks a lot, Altostrata.

[Petunia]

Many people have been able to avoid withdrawal symptoms or have only experience minor ones, by tapering slowly. Everyone is different though, and a minority of people have to go slower than the recommended 10%, to avoid symptoms, especially as the dose gets lower.

[gentlygo]

Checking in. I've tapered down to 0.175 ml daily and am planning 0.125 ml reductions monthly for the next year and a bit. Gosh this is slow. I hope this works. 

[bubble]

Being on a lower dose with a reasonable quality of life is a major victory.

 

Thank you for this update. Apart from the dose, how are you feeling?

 

We can never go slow enough. It helps to look at how well we are feeling and how much we have come down than to focus on how much there still is to go.

[gentlygo]

Still feel numbed out and like I only have one emotion. Still have 40 pounds of excess weight. But...I am no longer on the injectable, and am making some progress. Thanks bubble for poi ting out that it is about the journey. It is going g pretty well, I feel good without any withdrawal symptoms.

[gentlygo]

Still at it. Looking forward to Feb. 1, next taper by 0.125ml.

[Petunia]

Thanks for updating Gently, sending positive thoughts for your next cut.

 

It would be great if you would update your signature with your current dose so its easy to see where you are in your taper.

[gentlygo]

I tried to add a new line to my signature but it said I only had 12 lines (I think I had 9) but it wouldn't let me save. So I removed a couple of earlier lines from long ago.

I've been on the new dose three days and I'm feeling fine, good.

[gentlygo]

The only symptom I have right now I think is a little what I would describe as light-headedness....maybe the grip of the drug is loosening somewhat...

[gentlygo]

Found this link to be very helpful in Risperdal withdrawal information http://mentalhealthdaily.com/2014/06/23/risperdal-risperidone-withdrawal-symptoms-how-long-do-they-last/but am finding there isn't a lot of information on psychosis management without medication. The main symptom I would say that I am noticing is some anxiety and some slight depression, but so far everything has been manageable. I will see how I am feeling at the beginning of April to step down 1.125 ml. Have to start eating better and think about supplements. Thanks everyone for the support I've gotten here.

[ChessieCat]

Hi gentlygo,

 

You say that there isn't a lot of information on psychosis management.  I don't know the reason you were put on Risperdone so I'm not sure if what I am suggesting is suitable.  The resource below includes a module on Bipolar Disorder as well as the ones listed.

 

Resources:  Centre for Clinical Interventions (PDF modules that you can work through, eg:  Depression, Distress Intolerance, Health Anxiety, Low Self-Esteem, Panic Attacks, Perfectionism, Procrastination, Social Anxiety, Worrying)

 

It might be worth checking them out.  CC

[gentlygo]

I find the whole DSM pretty reprehensible and don't buy into labelling. Let's just say the original reason was an advanced emotional state where my connection to reality became distorted/exaggerated. What I am saying is that I haven't found a lot of places that talk about walking through this yourself and techniques to calm self down - my guess is that the solution will come through yoga/exercise/meditation/good diet/less caffeine/sleep and writing. At least this is my plan to cope if/when it comes this time. It is difficult to find people I know who get where I am at and find it a valuable place to be. I have to put my own value on it. I have to do it for myself and no one else. Status: steady, all going well. 

[Fresh]

You might like the approach of Dr Claire Weekes , see http://survivingantidepressants.org/index.php?/topic/10964-the-dr-claire-weekes-method-of-recovering-from-a-sensitized-nervous-system/

 

Any supportive practises you start now might make your transitions easier.  Why wait till things get difficult to start exploring?

There are lots of online cognitive behavioural therapy programs that you can check out , till you find something that resonates with you.

 

bw ,  Fresh

[ChessieCat]

Here is the link to an online CBT Course:  An Introductory Self-Help Course in Cognitive Behaviour Therapy

[gentlygo]

At 1.125 ml now. It's going well. I have dropped 10 pounds and I have started back at the gym again, eating better. 

[Altostrata]

Thanks for that good news, gentlygo.

[gentlygo]

Thanks Altostrada. I am down to 0.9 mL now. It's been an interesting and difficult year, lots of possibilities for stress to get at me or cause problems, but it hasn't. I have negotiated multiple losses this year and without a lot of problems. Very slight withdrawal effects only very occasionally  - like when brain is hungry for drug feeling - when that happened I backed up a step for a few days at the dose I was previously at and then went back down again and that seemed to work ok. 8 more months to go + 3 months for the drug to leave my system...

One change I can say for sure is that I am starting to actually feel some of my emotions which is amazing. For them to have been gone for so long, I have missed them. I also have very slightly less flat affect. There is slightly more expression in my face.

I have two friends in my city that I met with two years ago when they started coming off and they are successfully managing without meds. I have also recently become friends with another person who is also anti-psychotic free who lost 50 pounds and it transformed her life. I am so glad that I reached out. I am so glad this group exists.

I am thinking of starting a meet up group in my city to help support people to educate themselves about medication reduction and withdrawal. 

[gentlygo]

Had tapered successfully to 0.3 ml without too much problems and a fair amount of fluctuations in life. Holidays difficult, so I put it up temporarily to 0.6ml hopefully will try tapering down again soon.

[nz11]

Thanks for taking the time to update sorry you had to do an updose.

Gee you are right on the finish line. I'm sure you will be off soon. 

[gentlygo]

Hi,

 

Unfortunately when I had tapered down to about 25% of a clinically recommended dose of Risperidol liquid in February of 2017, I went back involuntarily to hospital and it was complicated. I see what happened as being entering into a stressful period and not upping my meds slightly or checking in with my psychiatrist.  Fast forward to today. I just came from my psychiatrist who helped me get from Invega Trinza down to Paliperidone 6mg and for the next three weeks I'll be transitioning to Risperidol liquid. This time me plan is 5% reductions every 6 weeks, with breaks in between to stabilize and adjust. I've also committed to seeing my psychiatrist every 6 weeks, and I've told 3 supports my plan. Meanwhile working on a healthier diet. I'm at 200lbs and I really should be at 140lbs. No other medical conditions at present and in relative good health. What do you guys think of this plan? Any suggestions.

 

Thank you. Wishing you all well on your journeys to reduce meds.

 

gentlygo

[gentlygo]

It's March and I'm on Rispiridol liquid. When I was transitioning from Injection to pill form of rispiridone my psychiatrist asked if I wanted 3 mg or 6mg. It wasn't a long conversation and I chose 6. Long story short I transitioned from the pill to the liquid and started at 4 ml. Now I'm down to 3.8 ml with a schedule to taper down 5% every six weeks. I think I need a different syringe to do that. Anyways it's very discouraging but I am committed to. going really slow this time with minor tapers down.