Jump to content
CrazyBoards.org

Nothing is worse than Invega Sustenna


Recommended Posts

I figured it is time for me to start my own thread. I was misdiagnosed with schizophrenia last year after having been given Invega Sustenna at 100 mg a month for 10 months. The medication gave me severe anhedonia where I can no longer feel pleasure or joy from anything. I have lost my motivation and willpower to function in life and have lost my job and been on disability ever since. I then learned the horrible facts that Invega Sustenna has a ridiculously long half life of 25-49 days, has effects up to 126 days, and that it can last up to 4-8 months in your body before it is cleared.

 

I have read that it takes on average 3-4 months after stopping the oral form of antipsychotics for most people to start feeling better. Does this mean that I will have to wait for over a year after stopping Invega Sustenna to start feeling better?

 

I have been desperately trying to find more people who were on Invega Sustenna but I could not find any success story about anyone coming off it at all. Apparently the drug is really new and just came out in 2009 or 2010? Has anyone ever taken it and successfully came off it? How long did it take?

 

My last shot was on August 29 2013. It's been almost 3 months and I have yet to feel any improvement. 

Edited by Narshe81
Link to comment
Share on other sites

The medication gave me severe anhedonia where I can no longer feel pleasure or joy from anything. I have lost my motivation and willpower to function in life and have lost my job and been on disability ever since. 

Are you absolutely sure that these are not negative symptoms? You say that you were misdiagnosed with schizophrenia so what is your current diagnosis now? Why were you diagnosed with schizophrenia? Did a doctor tell you that you were misdiagnosed? 

Edited by jt07
Link to comment
Share on other sites

Typically, they don't give Invega sustenna unless you have not been compliant in taking your meds or you're very likely to not take them. I guess since you quit in August, that might very well have been a valid concern. Did you quit with the agreement of your pdoc? Or did you stop on your own? 

Link to comment
Share on other sites

I quitted with the agreement of my doctor. He now thinks it may have just been weed induced psychosis and will give me a second opinion in three weeks.  I am also pretty sure it's all the effects from the medication since they all came a week or so right after I started Invega Sustenna.

 

Why do they have to give this injection once a month when the medication has a 49 days half life and can stay in your body for up to 300 days? I am extremely upset that I will have to be stuck with this feeling for God knows how long. I seriously have not found any successful story of anyone coming off this drug and I am really scared.

Link to comment
Share on other sites

I am also pretty sure it's all the effects from the medication since they all came a week or so right after I started Invega Sustenna.

But that also coincides with the psychosis. I'm not saying that these meds do not cause flattening in some people, but what you are describing is dramatically more than flattening and also describes negative symptoms. What does your psychiatrist say about this? Does he believe that it is the Invega?

I have taken Invega in pill form, and I never had any such problems. It was a good med. It upsets me when I see a potentially helpful med being demonized.

Edited by jt07
Link to comment
Share on other sites

Yes, I am sure it's the med. I have a friend who I met at the hospital who has also been on Invega Sustenna and he is suffering from same symptoms. I also found a few others online who were on this medication and all of them suffer from what I have and more. Some developed breasts, some got serious movement disorders, etc. They said I was lucky to just get anhedonia, but to me it is hell nonetheless. 

 

I am glad that the pills are working well for you. I guess it's just not for everyone because I cannot imagine living like this forever. I'd rather die. I am scared to death that this will be permanent but I still have to wait almost a year more to see if I got better. This med has a really long half life of 49 days. 

 

I really wish I could describe in words how I am feeling but I can't. It is the worst feeling. Total hopelessness and despair and constant feeling of dysphoria. Nothing I do changes how I feel. I feel like I have lost my soul.

Link to comment
Share on other sites

I looked up the half life info "The median apparent half-life of paliperidone following INVEGA® SUSTENNA® single-dose administration over the dose range of 39 mg - 234 mg ranged from 25 days - 49 days."

 

Talk to your pdoc. See what he says. I'm inclined to agree with jt07 that it sounds more like symptoms rather than side effects. 

 

All the APs can cause side effects. Mostly, you hear people complaining because the people that it's working for are off living their lives. Those of us that have a tougher time with meds tend to meet when looking for support. 

Link to comment
Share on other sites

I'm sorry that you're going through this. Invega Sustenna can be a great medication for some people, but I know from personal experience that it can be absolutely horrible for others.

 

I hope that you start feeling better soon. This isn't going to last forever even if it feels like it will.

Edited by Hadeharia
Link to comment
Share on other sites

I'm really sorry you've had such a horrible experience. I hope your doctor can think of something to help you when you see him again. 

 

Did you take the oral Invega before the injections? It's recommended to take those first so if any unbearable side-effects emerge, it won't be anywhere near as long of a wait for it to clear your system. I've been on varying dosages of the oral Invega for a few years now, and my old psych nurse was really pushing the Sustenna on me and to this day I don't know why. I was always 100% compliant. Maybe she didn't believe me because I was still having major symptoms, but regardless I just couldn't bring myself to take the injection. 

Link to comment
Share on other sites

  • 3 weeks later...

Hey so you doctor's appointment is coming up soon. Any improvement?

 

Hi,

 

Still not even a bit of improvement. The side effects are still as strong as they were when I was still getting the injections. Have really been losing hope.

 

My doctor's appointment is tomorrow. I will tell him everything and see what he can do for me. I will also ask him straight forward questions about when I should expect to recover and hear what he will say.

Link to comment
Share on other sites

 

Hey so you doctor's appointment is coming up soon. Any improvement?

 

Hi,

 

Still not even a bit of improvement. The side effects are still as strong as they were when I was still getting the injections. Have really been losing hope.

 

My doctor's appointment is tomorrow. I will tell him everything and see what he can do for me. I will also ask him straight forward questions about when I should expect to recover and hear what he will say.

 

 

Good. Keep us updated, please.

Link to comment
Share on other sites

Well, I just got back from my doctor's appointment.

 

I'm not sure if it went well or not. As soon as I got there my doctor asked me how I was feeling. I explained to him in details how I am feeling and how I have not felt any improvement yet. I then asked him that if it is because Invega Sustenna has such a long half life that is why I haven't felt any better. He said no. I then brought up how I have been reading online and explained to him about the cases that I have found where people still experience anhedonia after stopping antipsychotics. He then said that my being anhedonic is because my psychosis was probably induced by weed, and that it is common post weed psychosis to have anhedonia.

 

I asked if antipsychotics could cause permanent brain damage. He said no again. I then said to him that antipsychotic drugs can cause things like tardive dyskinesia which is permanent. I asked him if that proves that antipsychotics can in fact cause some permanent brain damages. He said no and that I was reading up too much junk.

 

He then brought out my files and began to go through them. He began to ask questions about my past hospital visits since I was young. He said that the record shows that I was abused as a child which prompted him to believe that I may be in fact experiencing a form of PTSD and mood disorder. After having said that, he made an appointment for me to see a mood disorder specialist on the 24th coming up.

 

I told him about cigarettes, alcohol, and other substances that used to give me pleasure all have stopped working. He asked me what I meant by stopping working and could not give me a straigth answer. He just brushed it off and then reaffirmed me that this could be PTSD and mood disorder. He said that I will just get better and better.

 

So that was my appointment with my doctor today. At the end he then prescribed me some more mirtazapine and sent me home. A good thing about this appointment though is that today they have canceled my CTO (Community Treatment Order). This means that cops will no longer come and drag me to the hospital if I refuse my medications or fail to show up for appointments. I really don't know what to make out of it all, but there's really nothing that I can do aside from waiting to meet with the specialist on Christmas Eve.

Edited by Narshe81
Link to comment
Share on other sites

I'm glad that you are going to see a mood specialist. Please take the mirtazapine as your pdoc has prescribed. It really is not all that bad of a med. Other than sedation and appetite increase, it doesn't really have any bad side effects, and sometimes these side effects resolve (at least the daytime sedation resolved for me). It is also easy to get off of when that time comes and not anything like the withdrawal from SSRIs.

 

Anyway, good luck with the mood specialist. Thanks for the update!

Edited by jt07
Link to comment
Share on other sites

That's great! Yeah, it can really knock you on your ass. But if you have any daytime sedation, it should go away after a week or so. I like it because it doesn't space me out like the tricyclics or blunt my emotions like the SSRIs.

Link to comment
Share on other sites

Guest
This topic is now closed to further replies.
 Share

×
×
  • Create New...