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Starting up on Clozapine


#21

My son did gain a lot of weight but he has recently started taking it back off, I never worried about the weight at first, I just wanted him sane again, then once he was I started with walking every day, we joined a gym and cutting back on late night snacks and junk food in general. He is on board with reducing now where he wouldn’t have been a few a years ago.


#22

So … reading up on research about smoking & Clozapine.
It is not the nicotine but the tar (or other chemicals) that make you hyper-metabolize (my word) the drug.

I found a study that says tar specifically.
And, I found a case where a man went into the hospital as a heavy smoker, they put him on a nicotine patch, but without the actual smoke, the Clozapine still went up to toxic levels while he was inpatient.

I started to read up on low tar cigarettes, and it’s amazing that the values (according to FTC reports range from under .5 to over 20 in whatever units of measure they were using. Of course, the ones with under 2 are pretty much impossible to find in the store.

However, I found these little tips that filter out more tar, and you’d be amazed at how much black gunk is inside one after he smoked just one American Spirit

More studies - exactly what I wanted to see:

With the e-cig, he’ll need less Clozapine than with traditional cigarettes.
That’s where we’re going.


#23

How much is your son taking now? and how long has he been on it? Just curious.


#24

Thank you so much for that!

I just feel like a piece of the puzzle is missing for him.
He’ll do better, then do worse - that’s why I’m looking at this from every angle, including the smoking.


#25

Has his family doctor checked for vitamin or mineral deficiencies? Just wondering-not saying that it has anything to do with the illness itself but it can be an influence if something like that is missing, like for an example my son originally was found to have almost no Vitamin D which could have contributed to his early depression, he takes 1 - 50K unit capsule of D3 a week and it stays at a normal level with that, his early depression has never returned. I am like you, leave no stone unturned. If you were closer I’d give you a big hug of support. :slight_smile:


#26

@Catherine, she is willing to check anything, and she cares because she always asks how he’s doing when I go in for a visit, which isn’t very often.

It’s just outside her area of expertise. However, she does suggest things. I was talking about the toxoplasma gondii infections & how what I read said there wasn’t a good way to check for an active infection & she said they check for things like that with special tests for AIDS patients that she treats.

So, she said she would read anything I brought her as far as research studies & run any tests we wanted, but I think I need to know what to ask for. So, I’ve got kind of a mental check list.

They did basic blood tests last year for cholesterol & diabetes & things like that & he checked out perfectly.
I think the only think was his hemoglobin was kind of thick, but she was pretty sure that was from smoking. We do need to get it rechecked though to make sure it doesn’t get worse because it could cause a stroke if it get really bad.

I would like to see if he has the gene for rapid metabolization, I’d now like to check for inflammation (other thread mentioned it with minocyclene), I’d kind of like to get him a scan to make sure there’s no tumors or anything, and vitamin & mineral deficiencies sounds more reasonable than those things.

Other than basic physicals & regular blood work, I don’t think they’ve done much of any physical testing on him - people talk about elimination physical causes, but in my experience, it’s all talk. Either they don’t bother or maybe they assume it’s already been done.

He’s double insured this year & the deductible on my insurance is all paid up, so it’s a good time to think about those things.


#27

My son’s doctor checks vitamin D levels, Thyroid, A1C, iron,cholesterol, and liver enzymes…I know there are other tests that check vitamins and minerals but I don’t know what they are called exactly. I’ll let you know if I find some other helpful tests.


#28

When my son was taking Clozapine they didn’t check Clozopine levels. They checked WBC and white blood cell differential on the regular. My son will likely start next week after he’s off the Haldol.


#29

My son had tried just about every anti-psychotic and had been very psychotic and delusional and non-compliant before we were finally able to get him a psychiatrist willing to work with us and get him up to a therapeutic dose of clozapine. He gained insight and says clozapine is the only anti-psychotic that does not torment him with akathisia. He is now on 700mg split 300, 100, 300 - 3 times a day. Most of the titration happened while he was hospitalized voluntarily a few times. He still hears voices but is so much better than before. He has actually lost 50 lbs since he started clozapine because he walks for 2 hours almost every morning and carefully controls his food intake. His skin is clear now too. He usually sleeps through the night now. He even set up an appointment for vocational rehab to try to get a job and was willing to see a counselor weekly. The main side effects are needing to spit and severe constipation that eventually led him to hospitalization for sepsis. The psychiatrist prescribed lactulose and now he is doing a lot better. He also takes benztropine mesylate, clomapramine, clonazepam, fish oil and probiotic.


#30

It was a rough night.

I went to bed about 10:30 & he was still up, but had went to take a bath. Soaking in it relaxes him.
I got up at 1:30 to see if he was sleeping,and he was, so I thought all was good.

Then, at 4:30, he was knocking on my door sure he was going to have a brain aneurysm (I had to explain to him what that was, but he was still sure he was having one) because he found a Remeron in his bathroom & took it to try to go back to sleep. For about an hour he alternated between sitting on my bed so I could hold his hand & make sure he was alive & watching TV in the living room, then he must have been quiet enough that I could fall back to sleep.

Either the meds or his nerves made him throw up. It’s not unheard of for him to do that, but it’s been a long time, but at least that gave me a chance to tell him it probably got all the Remeron out his system.

He’s sleeping now - looks like he’s out cold. And, I’m exhausted, even though I probably got as much sleep as usual.

I can’t find but 1/2 a pack of cigarettes outside his room, so that’s getting hidden and I’ll push the e-cigarette thing.

I’m sure this is from the smoking based on how he’s acted and what I’ve read - at least I’m hoping so. Otherwise, it’ll only be a matter of time before he’s back in the hospital. At least they could do the faster titration that qutepi mentioned if it has to happen. This time, I’ll make sure I take him to the one he likes, even if it is like a jail to me. He can smoke some there, regular cigarettes only, so maybe that will help get the dosage right.


#31

Thank you for sharing your son’s experience.

Does he smoke?
My son has a history of needing high dosages of anything plus he smokes. I feel like it’s going to take forever to get him to a good dose outside the hospital, although I’m more hopeful now that I saw the e-cig studies.


#32

Off and on he smokes. There were times “the voices” made him chain smoke, then he stops cold turkey for a few weeks, then he starts smoking just a few a day. He has also tried vaping but says it does not feel the same as a cigarette. I have been trying to get him stable for the past 2 years and this is the best we have gotten since “the big break” in July 2015. He has been hospitalized at least 8 times since that time. Prior to that, he was still functioning some what, living on his own and started to work full time for a few months. He stopped taking his medications and became catatonic, then completely psychotic/delusional, non-compliant and lost insight. The max dose of clozapine is 900mg so we have room to go up if necessary. Hope you start to see improvement. My son has been on clozapine for at least 6 months now and he really improved once we got him up to this level. Wishing you and your son the best.


#33

Do you think there’s a chance he could be ill? Just the usual flu sort of ill?


#34

I believe the cogentin/benztropine mesylate might keep him from smoking. He takes 2mg twice a day and this seems to stop any akathisia and decrease the drooling but again watch for constipation with all these anticholigeneric medications it can be a life threatening side effect to get bowel obstruction. When I tried lowering the cogentin or stopping it, he began to get the urge to smoke again. The psychiatrist also believes cogentin prevents tardive dyskinesia. Also cogentin messes with his vision a bit.


#35

No - I don’t, but I don’t think it was the meds either.

I think it was nerves and fear. He was 100% sure he was dying. He even asked if we could go to the emergency room.

If I wasn’t hopeful about the e-cig, I’d probably have taken him & tried to get him admitted again. Only, the hospital I’d take him back to this time doesn’t have an ER because they’re psychiatric only. This wonderful team that keeps leaving me feeling let down said that the one we just went to would keep him longer to titrate him up on Clozapine. Wrong - only 8 days.

He likes the other hospital better. They keep him at least 2 weeks. They would let him smoke 3X a day, so they would see those effects on the meds, and he likes the food & the fact he can go to the cafeteria for meals.

The things I don’t like - their don’t tolerate his pacing as well in intake, he keeps getting put on the lockdown unit because he tried to escape the first time he was there (he said the next unit down is really nice - the little bit he got to see before he tried to make a run for it) and I can only see him 3X a week instead of every day.

If anyone here smokes, you should try these little filters you can get called Tar Stoppers - they’re about $1 for a pack of 30 in the cigarette store. You wouldn’t believe how much black gunk is in one after a single cigarette. I think that should be enough to make people quit all by itself.

@qutepi - my son has said the same about e-cigs, but we get the bigger mods now along with the kind of e-liquid that makes the big clouds. He gets a little throat hit out of it & likes some of the flavors, so he can live with it. He has been on e-cigs only for long periods of time. I’m going to sell it as healthier & cheaper. It’s definitely cheaper, and whether or not it’s healthier overall, it’s better right now.

My son had his first break 12 years ago at 15, then again at 17, and again at 18. We did not hospitalize him. They were short, he recovered quickly & completely, and had insight. He was stable from then until 26, upped & downed his meds based on how he felt with his dr’s permission, but he either lost control or his disease progressed - and now nothing has worked right. Things work, then they very suddenly do not work, and in the midst of things we have a new doctor as it was time to move on from a pediatric psychiatrist.

The pediatric doctor was more willing to work with us on quick adjustments outside the hospital, he would see my son more often when meds were being changed - my son trusted him more.

I’m sticking with this doctor for now because 1. you can see on her face that she does care even if she is more cautious than I would like and 2. moving means he would lose his place on the ICT team which comes with a lot of other benefits.

But, switching doctors is very prominent in my mind.


#36

He’s not taking that right now, but he has been for the last few months because his hands were so shaky.

It had no effect on his smoking.

They explained about the constipation, and I think he’ll tell me.
He was on Suboxone for an opiate addiction for years & it causes the same thing.
He told me then & we used both stool softeners & laxatives to combat it, but he hated that side effect.
It’s one of the biggest reasons he got off Suboxone.

And, maybe the Suboxone held him stable for awhile.
He quit both it and Klonopin cold turkey just days before his first hospitalization.


#37

My son also had been taking suboxone and valium off label to keep him stable before that big break in July 2015. That is quite a coincidence.


#38

Well, to be honest, I kept hoping the Suboxone would be his miracle drug.

On opiates, he was symptom free - not even any social anxiety. Until we found out what was going on, he let me think that a variety of supplements was making the difference, especially 5HTP.

And, I think the Suboxone did work for awhile, even though he would abuse it. He’d delay taking it until he went into minor withdrawel, then take it with either Klonopin or Valium (he’d alternate to fight tolerance) to get a high. And, he’d do it in quantities that would kill most people.

It didn’t work as good as the opiate pills he was taking, but it seemed to help keep him stable as far as delusions went, and I didn’t know that he heard voices at the time. But, I only saw very rare signs in hindsight now that I know what his version of voices is like.

I spent a small fortune on drugs and doctor’s visits during that time because the Suboxone doctor was not on our insurance and most of the time was before Suboxone went generic, and even the generics took about 3 years to have a major price drop. I think he quit right about the time it became affordable.

I did call the Suboxone doctor’s office during his 2nd hospitalization to ask if they thought quitting like that was part of the problem, and they did not. I’m at a point where I take everything a doctor says with a grain of salt - without running some kind of test, I think they just guess over 1/2 the time.

Get this though - when he quit like that, he had no physical withdrawal symptoms that I could see or that he mentioned, and no one could explain that.

He was, however, very happy when the constipation went away. He’ll eat apples & even prunes, so I’m going to start working subtly on getting more fiber in him. He’ll even drink the orange metamucil stuff.


#39

And, as of 9:30 am, he’s up - so if I had to guess, that’s about 6 hours of sleep total last night.

That’s down from 8/9 hours of sleep at night plus a short nap or two during the day.


#40

We tried a few times to get him back on suboxone since he did function pretty well on it but either “the voices” told him to throw them away or he became manic on them and all the psychiatrists thought the suboxone off label was not a valid treatment so the next best thing we have found has been clozapine. It was even difficult to get him back on valium or klonopin too because of dependence but the anxiety causes a lot of his symptoms so he has to stay on them to be tolerable. He also gained a lot of weight on suboxone and his skin was all broken out.