An interesting recover experience
I found a very interesting respond to my post from another forum and I thought I would like to share it here. This would be very informative for anyone who wants to come off Invega Sustenna.
Here is the post:
Hi Narshe81 (and also jjasonn). We're in a pretty similar boat in terms of experience, and I agree with most of what you're saying.
I had a psychotic episode last December, and in January 2013 I was given the normal starting routine for Invega Sustenna - 1 234mg shot (1/7/2013) followed 1 week later by a 156mg shot (1/14/2013). This was the worst thing that has ever happened to me - bar nothing. Not the episode! That was bizarre, to be sure, and I'm worried about my medical condition.... but it's the drug that was so horrifying and destructive. I was dying to find the same information you're seeking Narshe and jjasonn, earlier this year, and I still am. All I can report is from my experience in the last 11 months and my research of the drug label and articles I could find online. I have learned some things. I never got another shot after 1/14/2013. That was against the recommendation of my doctor. We'll see how it turns out. Taking this torture as a precautionary measure, when it's far far worse than delusions themselves? That calculus didn't make sense to me. I hope I'm right. For one thing, it's absoultely clear that my doctor did not grasp the potency of this drug.
Here's the bottom line Narshe: it has been 11 months. I'm still messed up from the drug, but it has improved dramatically over time. I would say I was devastated through July (6 months out), transitioned from devastated to "heavily impaired" from July to October (9 months out), and since November I've been "impaired" (11 months out). I'm plenty messed up now, with cognitve issues, sexual function issues, anhedonia etc., but its nothing next to the hell I was in in February. Each month I can notice significant improvement in my cognitive function, my mood, and emotional sensation ... my sexual interest and testicular function, twitching, weight gain (20 lbs), dizziness upon standing, restlessness, inability to think or focus or engage watching tv, listening to music or playing games; difficulty conversing, feeling pleasure and being generally in perpetual deep boredom, having no motivation at all. My only experience with feelings as low as suicidal ones, in my entire life, was in January-February. That has certainly passed. Some of the effects in that incomplete list went away before others. And I didn't feel that great or aware about my improvements each months until after about 6 months. At the very beginning I was urinating every 30 minutes and couldn't move my face. Most of the list was ongoing after two months. Anyway, I didn't feel like I was appreciably improved until around September - so that's 8 months later before I personally felt any real hope of recovery. I hope knowledge of that date helps you. This (11 months) is the first month where I feel I can "pass for normal" to an average person. They might think I'm tired, but would never think I'm way off/drugged, even if they know me, actually. I can still tell I'm messed up, of course. But I can also tell that I've gotten a lot of abilities back. It's very exciting actually. I also lost the 20 lbs I gained from the drug through vigorous exercise from July to September. (recommended) I still have many of the same feelings you have: I'm hoping I'll improve all the way, maybe 90% or something, maybe more. And I'm very worried about the permanent effects. I'm personally very focused on the cognitive effects, but I'm also wondering if my tongue will stop twitching when I stick it out and so on. Thinking was the name of my game, 24/7, and it was just snatched away. But I can tell you that you won't remain devastated forever; that it at least improves to "impaired". And in 6 months maybe I'll be able to tell you that you'll improve all the way or almost all the way. Also, DO NOT be discouraged by people telling you that you're exaggerating, that there is nothing wrong, or that they can't tell (which may be true); that your complaints are actually of the condition and not the drug, etc. These people have no idea what they're talking about. I have a supportive and attentive girlfriend, who was able to see many of the subtle things (to an outside observer) of which I complained. That was very helpful to me. My father on the other hand, thinks this has all been exaggeration and a hypchondriac's prattle. So I had to deal with that and it's tough. The drug is devastating for real; don't be BSed out of knowing that.
My diagnosis was psychosis NOS (not otherwise specified). That basically means I didn't get a "real" diagnosis cause they weren't sure what I had / had happened. My psychosis consisted entirely of paranoid delusions and it lasted about 45 days - I had no hallucinations, no difficulty thinking (delusional belief formation aside), etc - I definitely had paranoid delusions though. I also separately have depression and high anxiety. I normally take no medications of any kind and I never do any drugs, including alcohol, with the sole exception that I sometimes smoke tobacco. I'm a physicist with advanced degrees and I went to/ worked at some of the very top schools in the country. That's diagnostically relevant, but I'm also hoping to get a cred. boost. I'm 29 years old. I still am trying to figure out what my underlying diagnosis is... bipolar perhaps? I don't think I have schizophrenia, but I'm not certain. Statistically, it would be a late onset. I really just don't know, and neither did my doctor(s). But I was told to continue taking antipsychotics just in case I was schizophrenic and I disregarded that advice. I recovered "100%" from my psychotic delusions in late January, which I was told is rare. So far I've had no recurrence of any psychotic symptoms.
As far as I could find, there is nothing that can be done to speed the removal of the drug from your body. I suspect that obesity makes the drug last longer as it gets stored in fat, but that's a bit of a guess. My intuition says drink a lot of water and exercise if you want to try and speed up the removal. According to the label for Invega sustenna, enzyme CYP3A4 might be important for eliminating paliperidone. It says that if you take an inducer of CYP3A4 you may need a higher dose for paliperidone to be effective. It later claims that this result is contradicted by other studies, so its unclear. You could try to induce that enzyme. Capsaicin is the only food I found online to induce that enzyme. I never tried it, and I certainly didn't want to take another drug for this purpose, but I wouldnt mind spicy food. Kind of an aside I guess, but it might be worth trying. St. John's wort is a major inducer as well, but its a drug.
After the amount of time I've been off the drug (better put - since last injection), I'm not sure anymore if I'm still heavily drugged, or rather if my brain chemistry hasn't normalized (or if there is permanent and irreversible damage). A bit of both I expect (or all three). But FYI the half life for a 234 mg dose is 49 days. My dose was essentially 400mg in some sense. Your dose (naively at least) is 100 mg plus what was left over before that; probably another 200 mg or so. So permanent damage from duration of use aside, we probably quit from similar dose amounts. Since the half-life decreases with quantity, using 49 days should give you conservative estimates of the amount of palmitate left. I remember finding 15mg to be the best conservative estimate of my equivalent oral daily dose at injection time. SO, 2 months later, its about 7.5 mg/day and so on. I'm not sure how useful or accurate this method is though because it doesn't align with my experience that well. One thing to keep in mind is that 49 days is a median. That means for some people they still had 85% after 49 days. I found something a while back that had actual raw data and the variance was very high. I personally set my expectation at double the median to be very conservative. With the time of "brain recovery" though, I mean... this is pretty much guess-work. The main thing is the my personal "raw data" - which is that I know how I feel. And you do get better over time. I would be interested in getting a blood test to see how much drug is still in me (and how much prolactin), but I never did that. You could consider that if you were very curious. Another kind of raw data.
Anyway, I've learned a lot about paliperidone from obsessing about it online the past 11 months. Bipolar patients can expect decreased cognitive funtion, including poor verbal recall, poor working memory, and slow processing speed. Switching to abilify can reverse hyperprolactinemia, for anyone having sexual issues and wanting to stay on anti-psychotics. That first tidbit points out that the underlying condition can have a big impact on your experience of paliperidone, since the drug apparently improves thinking for some schizophrenics. This is already too long and I think it hits what you wanted to know already, so I'll end here. Hope this helps. You just have to wait it out... for you know, maybe 18 months total? It's a while. Good luck. And as far as permanent effects I'm in your boat completely. Anyone out there have information about how things look past 11 months?
