Family and Caregiver Schizophrenia Discussion Forum

Long-term outcomes of unmedicated Sz - Open discussion!


#1

Is there anyone who would iike to discuss this article with me? Both those of you who have loved ones who are medicated and those not. Especially interesting to those who have loved ones who are unmedicated and who have observed their (severity) symptoms through a time-period, do you find any resemblance with the study outcome (see p. 410)?

Title: Factors Involved in Outcome and Recovery in Schizophrenia Patients Not on Antipsychotic Medications: A 15-Year Multifollow-Up Study
Author: Martin Harrow, PhD, and Thomas H. Jobe, MD
Journal: The Journal of Nervous and Mental Disease
Year: 2007


#2

I will be happy to discuss my thoughts - after I read the “homework” - sounds very interesting.


#3

My son is unmedicated, realistically, he has always been unmedicated. He took Geodon for (maybe) one complete week and another time tried a combo for (maybe) two days.

I am struggling with this study. Basically because I think its so hard to compare people with scz. Schizophrenia seems to be a big umbrella name for a lot of similar, but sometimes quite different, brain disorders. They do point out the variables in play, but still try to work toward generalities in the results.

Its difficult for me to just figure out a starting point for the disorder in my son. I know when he first mentioned what turned out to be him hearing voices, but when did it actually start? The paranoia was there about two years before he mentioned the voices.

My son’s version is paranoid and insidious. He does have some abilities – he lives by himself. I suspect his success is due to experiencing more of life before the scz disabled him.

Did I miss something in my reading - were they sorted out by similarities for comparison?


#4

My understanding is there are 5 types of scz and paranoid scz tend to be higher functioning. From my experience however the paranoia is a huge factor in med compliance.

The study is interesting. If I were to show it to my son, it would validate his decision to live unmedicated. I agree simply putting someone on a med for life is something we should take a closer look at, and maybe this is a start.

Our journey started in his late teens and he is now in his early 30’s. A hospitalization in his mid 20s started the medication/therapy course. Over the next 5 years various meds and combos were tried, but when they alleviated the need to research and prove his delusions, he also became a couch potato and gained 100 pounds. He did take part in some CBT skill training. Nothing got rid of the delusions however and he abruptly stopped meds. That was a disaster. However almost 2 years later he is stable. He functions in select social settings. And trust is being rebuilt. Some days are still a bit iffy, but all in all, as long as he is not a danger to himself or others, I will support his decision. The article did touch a bit on the individual personality and coping skills and there may be some merit in that. I would not recommend it across the board however.


#5

Has anyone read “Anatomy of an Epidemic”? I found the book to be fascinating and a bit scary. I have read enough posts on this forum to be convinced that antipsychotics can make a huge and positive difference for some people. But they aren’t quite what I thought they were. For example, I’ve often heard them described as being like insulin for a diabetic, or that they “correct an imbalance” in the brain’s chemistry. Neither of these things are quite right. It seems that they actually create an imbalance (and one that proves to be helpful for some). But once that imbalance is created, if the meds are stopped suddenly, then you’re left with the imbalance and nothing to counteract it. Which is why some people crash so hard when they stop.

The study listed above is interesting, and it’s not the only one to show results like that. The WHO did two surveys, I think it was, and found that schizophrenics had a better long-term prognosis in third world countries then in the industrialized world, and that the primary difference seemed to be that they were not medicated.


#6

Yes the crash was worse than the illness when my son abruptly d/c antipsychotics. Here is the part that ticked me off: He refused meds the first part of his hospitalization but he knew in order to d/c him he had to be med compliant. Upon d/c there is no follow up. None. He was d/c and anyone he wished could pick him up or he could just walk away. So he chose the one person who he felt would not require him to be compliant (that person learned what a mistake that was) He and crashed and burned. He was impossible to be around yet really needed someone to look out for him. Fortunately, he eventually stabilized.


#7

The article’s conclusion discusses a subgroup of people with sz who, when they came off of meds, did not “immediately” relapse. Those people had good 15 year outcomes with periods of recovery.

I think the keys here are: 1) were on anti-psychotics, 2) did not stay on them, 3) did not relapse immediately when off of them, and 4) are in a select group (i.e. only some people with sz). Per the study, some of those people had periods of recovery for the 15 years that followed coming off meds.

From my own experience, my 34 year old daughter immediately relapses and stays relapsed until next medicated, every time she comes off of meds, so is NOT part of the subgroup that this study found with a potential good 15 year outcome. Sigh…

I personally think that this study shows that someone who goes on meds, who comes off, doesn’t immediately relapse and has any sort of recovery may possibly be set for a good long term outlook without meds. This is possible, but only for a select group (i.e. most won’t have any sort of long term recovery without meds). I wish the numbers of people who recovered and what type of sz they had, and how long they were medicated was discussed in the article more.

I quote the part of the article I refer to from the conclusion:
“However, the current data suggest that for the select subgroup of patients with schizophrenia who are not in clinic settings, who have gone off antipsychotics and did not immediately relapse, and stayed off them for a period of time, a surprising number experienced periods of recovery and continued to function well for a considerable period without antipsychotics. Clearly, the present longitudinal data suggest that not all patients with schizophrenia need to use antipsychotic medications continuously throughout their lives.”

I would agree with the study that “not all” need to use meds continuously, and that more work to find out who can come off successfully should be done.


#8

My son started getting invega injections Dec. 24, 2016. His last injection was Aug. 3, 2017. Thats the day he got the lawyer to revoke the CTO. He was doing quite well and was fixing up his house with my help. His symptoms started returning in the beginning of Oct. 2018. Now it’s Jan. 2019 he’s not in reality. Lives in a empty house which he is dismantling taking down walls and all cuberts says home invation thats what’s going on. Calls every day telling me he’s hungry and starving meantime he throws it out says its bad. So heartbroken and sad. Z


#9

I am so sorry for your heartbreak @Margi . That he was doing well for over a year off of his meds is good, very good. The return of the symptoms for him in the last few months must be very hard for you to watch.


#10

So far no one has really determined the exact cause(s) of scz so I wonder what brings on the onset would also determine the chance of recovery to the point of d/c meds. This article is interesting but in reality so much is just unknown.


#11

It seems to me that every one will respond differently to medication or lack of medication, and each case needs to be taken individually.


#12

The National Institute of Mental Health is enrolling volunteers in a six month long in-patient study of schizophrenia. The participant actually gets paid based on a number of parts of the study. I looked into this for my daughter. They have private rooms, entertainment, and leave with several thousand dollars. She, however, will not volunteer. Mainly because she doesn’t believe she has sz.

https://www.nimh.nih.gov/labs-at-nimh/join-a-study/adults/adults-schizophrenia.shtml


#13

This is a tough topic for me. My son was medicated for 5 years but was able to work part time and lived with roommates. He took a variety of drugs and amounts during that time. Sometimes over medicated. After 5 years he slowly weened himself off of his antipsychotic and antidepressant drugs over a period of time. Developed type 1 diabetes during this period but otherwise saw much improved over all health and ambition. I can’t help but think the various drugs killed his pancreas. No doctor seems to care about that. Anyway at some point he didn’t treat his diabetes effectively and his mental health took a nose dive. Unfortunately he would not listen to reason. Eventually lost his job, car and kicked out of rented room. We tried everything to get him help. At times he seemed psychotic. Finally he jumped off our second story deck, he was trying to avoid a doctors appointment I had made for him, and broke his leg. Cops 5150 him and he spend a month locked up in a psych ward. Now he is living with us. Gets shots twice a month. He just got one today and seems psychotic to me because of it. It will wear off a bit in a few days and he will feel better. Frankly I am disgusted with the mental health community. My son sits or sleeps and eats a lot. Is this the best we can do? I’m not sure everyone can get off these drugs entirely and remain healthy. But it is worth a try, maybe several tries. I wish my son could have had a chance to get his diabetes under control before all the meds started up again.


#14

That would be great if your daughter would go there. The biggest challenge is when there is no insight. It looks like my son will never have any insight.


#15

It is heartbreaking to hear your story. I am sorry that better help isn’t/wasn’t available. I, too, worry about the side effects that might happen as a result of the medication. The NAMI class on meds tries to educate the care-givers about the toss up between psychosis and physical health problems caused by the drugs. I find it most upsetting that after all these years, there is no physical marker to measure schizophrenia, and so there are no physical markers for the medicines used to treat. It IS all guesswork, but weirdly enough, some meds work well, some people recover and don’t need meds again, some try every med and none seems to work, some doctors overmedicate… oh gosh, it is a system that has no system and I would never have believed it until thrust into the mental health treatment system.

The study in Boston by the NIMH uses physical testing of where the patient is when they join the study, then they wean them off their medication for a few months and test more, then come up with a plan to stay off meds, adjust meds or, well, some other plan to try and help manage the schizophrenia. But a patient has to want to be there. And for each MRI, test, or part of the study completed, they get paid. I think it is a great research study, but just the fact that the person has to WANT to be there, means some sort of insight, and THAT isn’t common to begin with, so the study may be flawed right from the start.

I HATE that most articles I’ve read on sz say it is a long term situation with little hope of recovery to a “normal” life. It isn’t fair to the lovely people our loved ones used to be. But, all we can do is the best we can do.