Family and Caregiver Schizophrenia Discussion Forum

Starting to refuse medication and therapy

My son had his first psychotic episode in mid August. He was hospitalized for 9 days and then continued with a First Episode program. He is on 10 mg of olanzepine right now. His constant hunger is gone and he is not as sleepy during the day anymore. Tonight for the first time he refused to take his medication. I am panicking. Things were going pretty well, he is back at work, driving etc.
He is really obsessed with moving out but the agreement was to wait at least 6 months until the most critical time for a possible new psychotic episode has passed. Then today he said he doesn’t want to wait anymore.
His depression and anxiety scores are really high too. The therapist is working with him but I don’t think he is actually using anything he is learning there. And doesn’t take any advice from me, no matter how low key and gentle I try to be with suggesting things or reminding him of things he has learned.
I’m just so worried right now, I feel like everything is spinning out of control again.

1 Like

This situation sounds very alarming. I would suggest contacting his doctor/therapist immediately, relating the information you have posted here and requesting a long-acting injectable medication, to get him past this higher-risk period. The doctor may have some suggestions for convincing him to take his current medication, as well. If side effects are a problem, the most bothersome should be brought to the doctor’s attention, since there may be another med he could try.

It’s really really hard at the beginning. At least you know what to look for now and maybe mitigate or even avoid another episode.
In our case, each episode became a bit more manageable and finally our son decided meds were the only way for him to have some peace.
Your son sounds very independent. If he stops taking his meds, it may affect his employment which would then affect his ability to live independently. That alone may make him more med compliant, once he realizes that his meds allow him to keep his job.
In any case, this feels like very hollow advice.
I’ve been in your shoes and know that feeling of dread and panic. Our son took 3 awful years to get on the right med and stay on it. BUT, he is working, 17 months sober, and med compliant now. There is hope although things can look very bleak at times.
I don’t have many answers but am offering support for your own well being. :heart:

3 Likes

@frustratedinlaw The thing is that we were just at the psychiatrist on Wednesday, two days before this happened and talked about why it is so important to stay on the medication for a minimum of 6 months, possibly longer. And he said okay. She even asked him about side effects and he said he didn’t have any. He has gained quite a bit of weight, but he’s over 6 feet, so it’s not as obvious than it would be if he was a shorter person. But it does worry me. She told him he could switch to a different med if he was having bothersome side effects.
He ended up taking his pill when he woke up later that night and I jumped out of bed to offer it to him. Took it last night and tonight without seriously trying to protest. But I have a knot in my stomach over it and left a party early tonight to catch him before bedtime so I could give him his medication. There is no way I’d trust him to take it himself. He has the information but doesn’t seem to really get it.

@Hanginginthere I’m so glad that your son it med compliant and seems to have made a conscious choice to be. It sounds like he had to go through a few episodes to get there. I so don’t want this for my son. I feel like he is going to get traumatized over and over again if it happens and I want to protect him from that. The whole thing has been such a nightmare. I am explaining to him that him taking his meds will hep him get to the point where he can actually move out and have it be in a stable situation instead of possibly endangering his job and his ability to get his own place.
It’s good to know that your son’s episodes became more manageable instead of worse. That is my biggest fear, that things will spiral down and he gets less and less functional.

@kitmom, Unprecedented weight gain is still a scary side effect, even in a tall person, and he may have another side effect that would be difficult and even embarrassing for a young man to mention to a couple of women. Perhaps you and he could take a look at the list of available drugs with their side effects and see whether he is interested in trying any of them in particular, rather than just relying on the doctor’s questioning. I wonder whether he would be more med-adherent if he had more control of the choice of medication.

I agree with @Hanginginthere with respect to the necessity of keeping his job in order to live independently. If he has insight, perhaps you could remind him of this and that it is dependent upon his remaining medicated, the next time he speaks of leaving.

So many things are easy for me to say, since I’m just trying to help manage my relative’s illness from afar, mostly providing financial support, so that the person who lives closest to him doesn’t have to worry about that. Just know that I am sorry that you are going through this, sending a virtual hug, and wishing you strength.

Well you are way ahead of where I was when my son first became ill. I was in as much denial as he was. So hopefully your son’s journey will be easier than our son’s.
The only advice I have is that the family therapist assigned to us by the first psychosis program was invaluable in helping us. I felt I could tell her anything and she kept saying that we, the parents, were her clients also.

@frustratedinlaw , I didn’t mean to imply that the weight gain is not alarming, just that he doesn’t seem to see it as a bothersome side effect. I worries me quite a bit. He had a ravenous appetite at first, but now his appetite is more normal. But that doesn’t seem to slow down the weight gain. According to the scale at the doc’s office he is at 15 lbs gain. But by the time he was weighed there for the first time he had already had very noticeable weight gain. I could tell just after the 9 days in the hospital.

1 Like

@kitmom, I understand what you have said, and hope that your son’s weight gain will be short-lived. Still, I think that health professionals should consider weight gain, if it is a known side effect, whenever drugs are prescribed, and definitely disclose that possibility to the patient.

I recently learned that a drug that I’ve taken for several years not only puts me at higher risk for osteoporosis, but also carries the risk of weight gain, since it apparently increases appetite in some patients, to the extent that it is even given for that purpose in patients who have had chemotherapy. None of this was disclosed to me by the prescriber, and I don’t recall seeing it in any of the packaging inserts (that I always read).

I’m probably more sensitive to weight issues than most, because, although I’ve been moderately successful in losing weight when I wanted to, I’m short and I have to be careful about the number of calories I consume. My husband and children are tall, however, and some of them have really struggled with their weight. Being overweight carries a not-insignificant stigma, especially for women, but for just about everyone these days, I think.

The doctor did disclose this. She actually had him sign the sheet of paper that talked about it. My issue with the doctor and this subject is that she is not taking the total weight gain into consideration right now. And honestly, I don’t want to bring it up during the appointments because I am afraid that my son will refuse any medication because of it. He is very stubborn and it takes so much out of me to explain the importance of taking medication over and over with the thought that he might totally refuse in the back of my head. I should call the doctor and see if I can have a phone visit or something without him to discuss options. I hate to do that, but he does not currently seem to have the cognitive ability to reallty process everything.

1 Like

@kitmom, Got it.

Wondering whether DNA testing might help, provided that those affected can be persuaded to have it. I know from my testing that I need to avoid certain foods if I want to avoid weight gain, although drug profiles weren’t included. I’m not sure that there’s an effective substitute for my particular drug, in any case.

Olanzapine is quite notorious for causing weight gain. Psychiatrists still tend to use it, because it’s also well-known for its effectiveness on positive symptoms. A ravenous appetite that levels off in a couple weeks to a month and weight gain of 10-15 pounds is a fairly typical response— my own included. Diet and exercise and taking regular lipid and glucose levels are often part of management plans. I ultimately switched to a different drug, as the psychiatrist suggests, but at the time it was the best medication available.

What strikes me about this thread is its focus on the anxieties of caregivers and extrapolation/projection/speculation onto the cared-for. I gather that the diagnosed doesn’t report concerns about weight gain. Is he able to articulate why he’s reluctant to take the medication? Is it just this particular AP drug, or AP drugs in general? Perhaps you should focus on or with the anxieties and the “logic” of the diagnosed, if your goal is medication compliance. LEAP strategies can help with this, but the first step requires some quieting of your own anxieties, so you can listen theirs.

Most if not all AP medications tend to cause weight gain, some worse than others. Olanzapine and Seroquel (quetiapine) are generally considered the worst. Medication therapy is always a compromise.

2 Likes

Good points. My guess is that we’ve all witnessed the demonization of the overweight/obese in our society, with ostensibly well-meaning others lecturing us that we need to lose weight for our own good and that we are costing them $$$$$ in healthcare dollars. No one wants our already mentally-distressed loved ones to incur yet another stigma.

As an aside, I actually made my doctor change my chart, removing the word morbid that she had previously used to modify my weight category, after pointing out that people in my family have been quite long-lived suffering relatively few chronic illnesses, regardless of weight, and that my other health metrics are excellent. (My parents, who are in their mid-90s, still of sound mind, and living in their own home, and I have had genetic testing confirming almost no predispositions to chronic health problems, as well.) IMO, as a former insurance industry professional, if being overweight were such a problem, aggressive treatments for that would be routinely covered well before patients reached the so-called morbidly obese category. DNA testing would more accurately reflect the relative risk of future health problems, but who knows if or when Americans would consent to its widespread use?

My outlook is also informed by a family member having to take the extreme step of bariatric surgery, something that has helped him to lose a massive amount of weight, correct some troubling health indicators, and, oddly, added an inch or more to his now-less-burdened frame, but that is accompanied a quite restrictive diet henceforth. As it happens, however, my BIL with SZA, a different person, was quite upset about his weight gain, making us wonder whether it played a part in his medication plan adherence problem.

Thanks for mentioning the LEAP method. My BIL is not in denial regarding having SZA per se, but we are using LEAP in the hope of communicating better and, frankly, encouraging him to be more assertive with his doctor regarding changes in his treatment plan. We hope to convince him to agree to psychotherapy sessions, as well, but that may take some time.

Wondering whether anyone has had experience with doctors prescribing Metformin at the same time as AP drugs, to possibly temper the attendant weight gain.

@Maggotbrane Unfortunately my son was not able to express any specific reason other than he doesn’t think he needs the medication anymore because “this is over now, I don’t need it anymore”. I have asked about whether he feels that it does something to him he doesn’t like or if he can explain what bothers him and he can not. It’s hasn’t come up in the past week or so.

However, I am very concerned about the weight gain. I’m not sure where he started off, but he has gained 15 lbs between 9/22 and 10/27 and a quite noticeable amount before that. He continued gaining weight even after eating more normally again. He was admitted on 8/23 and discharged on 9/1 and had gained visibly at that point already. Anyway, at my estimation it’s probably a total of at least 30 lb in less than 3 months and still going up despite not being extremely hungry anymore. He looks just doughy and bloated where he was slender but muscular before. I am not concerned about his looks as far as attractiveness but what I mean is that he looks very unhealthy.

The other thing is that he had labs drawn yesterday and his cholesterol is very elevated now, it was normal less than 3 months ago. That scares me a lot.
What other options are there to mitigate this? I feel like he needs a med change but his next appointment is not for another 2.5 weeks.

My daughter gained over 60 pounds on the medicine she takes for schizophrenia. She watches her diet and exercises somewhat, but the trade off of a 3 year active psychosis was well worth the weight gain that occurred in months after medication. She accepted it slowly by my repeating to her that “the women in our family all gain weight in their 30’s”. I think that ALL of the medicines she tried had a side effect of weight gain.

The psychosis was ruining our lives. The weight gain is a manageable side effect.

At the NAMI class on sz medicines, it was obvious that all of them, ALL of them, have unwanted side effects that occur. I cried at that class. Publicly, sobbed out loud. I realized in that class that a medication that worked had to be forced on my daughter by me to get rid of the psychosis. It was her only hope for a good future.

She has that good future now, 3 years of NO psychosis except occasional mild voices, a weight that she has accepted, and a series of stable jobs each better than the last.

3 Likes

I found a 2017 paper on the NIH website about the use of lorcaserin (Belviq) to prevent the weight gain associated with AP drugs. At the time, it was apparently the only really promising drug for that problem. In 2020, however, the FDA wanted it pulled from the market, saying that the risk of cancer associated with its use outweighed any positive effects. Its manufacturer no longer produces it for the US market.

www.fda.gov/drugs/drug-safety-and-availability/fda-requests-withdrawal-weight-loss-drug-belviq-belviq-xr-lorcaserin-market

@oldladyblue Three years of active psychosis sounds like utter hell. We had a week and it was the worst week of my life seeing my son suffer like this and not knowing if I would be able to get him help. It was so scary for him and the entire family. We are very early in this journey, and he was fine and healthy just 3 months ago. I don’t want to ruin his physical health if there is a way to prevent that.
@frustratedinlaw Thanks for the link.

I took both for a while as I was on the borderline between prediabetes and diabetic blood sugar levels. I made a change to a simplified low carb diet similar to Atkins or Keto. I stopped when I dropped weight and my A1C and triglycerides returned to normal. It’s creeping back up again as exercise is limited due to injury. @Lirik is also an advocate for diet and specifically vegetables for weight control. As I recall he’s taking Olanzapine, while I no longer take it.

In my case my internist was the one who prescribed metformin and lipid control and blood pressure medications. Under a low carb diet, I’m able to reduce both. In my experience Olanzapine tends to give you cravings, so limiting food available with low sugar and low starch options can help a bit. Initially it’s like the old joke, a sea food diet— you see food and eat it.

2 Likes

yes @kitmom, those 3 years were pure hell. I had interrupted sleep regularly, and my own mental positiveness was whittled away with “advice” from everyone and their brother that turned out not to help much. I never felt so helpless in my life, as I usually can figure out solutions to most problems. I didn’t even know what schizophrenia or severe mental illness was before her psychosis started. I thought she was just being “bad”. I thank God for @Hope’s post here on unmedicated family members, as that is how I found this site. I know that was the start of my climb out of hell for my daughter and I. NAMI helped, Reddit helped, and the police and court systems saved us in the end.

There are side effects to every one of the drugs for severe mental illness. Choosing what gives the best result with the least side effects is what one must do if their loved one is using medicine to control the illness. Right now I am doing chemotherapy, and find the same is true for every one of the chemo drugs and side effect drugs they are giving me. It’s a balancing act.

I guess life in general is a balancing act.

Good luck with keeping your son on a good path for him and your family. Vigilance and reading are your best protections.

4 Likes

@oldladyblue So sorry to hear you are experiencing issues with your health! Keeping you in my prayers!

1 Like