Might be starting clozapine

P

playstation

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#1
Waiting to hear back from the MHT. I should be going on it. Hope I don't gain weight on it and hope the sexual problems are better.

Anyone here on clozapine?
 
Parayana

Parayana

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#2
I was on Clozapine for a couple of months. it did nothing for my SZ but didn't cause any sexual problems.
 
fazza

fazza

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#3
Don't be put off by a lot of negative views on clozapine. It is a wonderful drug but it can give you serious problems.

It was the only drug that stopped my voices. The down side was that I was the 1 in 100 that suffers from a drop in my neutrophil count (type of white blood cell) I was a year in to treatment when suddenly after my routine test I was in the red zone. I had to come off it straight away no taper and the withdrawals were pretty bad.

One week later my neutrophil count was back to normal but I couldn't restart it.

The other problem was weight gain. i was 81kg before starting and went up to 105kg. This has dropped back off after stopping clozapine.

If you read the leaflet of any drug like anti-deppressants or anti-psychotics you will see a huge page of potential side effects but because clozapine has such a bad reputation we worry about clozapine more than others.

You will have weekly bloods at first then fortnightly so on and so on. They will check your BP and weight and in the uk they have a no blood no drug policy. Meaning if you refuse the bloodtest they cant give you the tablets as you will only get a weeks worth at a time during the early weeks.

Try not missing any tablets. If you miss I think 2 days you will have to start again. It is a serious commitment but one I was glad to take even though for me it ended badly.

Eat sensibly avoid carbs.
Keep an open mind. I saw many sick patients at the clozapine clinic starting treatment and within weeks they were starting to feel so much better.

Good luck
 
M

Mae2019

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#4
Waiting to hear back from the MHT. I should be going on it. Hope I don't gain weight on it and hope the sexual problems are better.

Anyone here on clozapine?
Yes I was was on clozapine that caused me to be a total zombie. My responses were extremely slow. I had Absolutely no sexual desire what so ever! I gained 40 pounds and no matter what diet I was on I could not shed the weight. I also wet the bed every night. My arms are scared from monthly blood draws. When I moved out of state I could not find a doctor to manage my medication-clozapine. It was explained to me that this medication is not approved by the FDA. And was only prescribed for institutionalized schizophrenics when no other medication options worked. I was forced to wean off of clozapine. I developed cholinergic rebound syndrome. It almost cost me my life! It has now been one year and I still am quit sick. Starting on clozapine is difficult in itself but coming off of it is a living hell!! A true night mare that I hope to wake up from soon! Please do yourself a favor and take charge of your life! Because these psychiatrist don’t really care about you! They go to work every day just like everyone else. (Except I don’t work cause I’m to sick from clozapine) Also, these doctors get a handsome cut back from prescribing clozapine.
 
fazza

fazza

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#4
Clozapine gave me my life back. I was not zombiefied. I had my emotions back and functioned really well.

Like all meds it will have different affects on each individuals. Speak to as many people as you can.

I visited the clozapine clinic before I started and spoke to patients.
 
M

Mae2019

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#4
Don't be put off by a lot of negative views on clozapine. It is a wonderful drug but it can give you serious problems.

It was the only drug that stopped my voices. The down side was that I was the 1 in 100 that suffers from a drop in my neutrophil count (type of white blood cell) I was a year in to treatment when suddenly after my routine test I was in the red zone. I had to come off it straight away no taper and the withdrawals were pretty bad.

One week later my neutrophil count was back to normal but I couldn't restart it.

The other problem was weight gain. i was 81kg before starting and went up to 105kg. This has dropped back off after stopping clozapine.

If you read the leaflet of any drug like anti-deppressants or anti-psychotics you will see a huge page of potential side effects but because clozapine has such a bad reputation we worry about clozapine more than others.

You will have weekly bloods at first then fortnightly so on and so on. They will check your BP and weight and in the uk they have a no blood no drug policy. Meaning if you refuse the bloodtest they cant give you the tablets as you will only get a weeks worth at a time during the early weeks.

Try not missing any tablets. If you miss I think 2 days you will have to start again. It is a serious commitment but one I was glad to take even though for me it ended badly.

Eat sensibly avoid carbs.
Keep an open mind. I saw many sick patients at the clozapine clinic starting treatment and within weeks they were starting to feel so much better.

Good luck
Clozapine gave me my life back. I was not zombiefied. I had my emotions back and functioned really well.

Like all meds it will have different affects on each individuals. Speak to as many people as you can.

I visited the clozapine clinic before I started and spoke to patients.
Thank you so much for your reply. I’m very happy for you that this drug works. May I ask please, what is your dosage? I was on it for 15 years at 450 mg daily. I have come to understand by medical professionals that it is an extremely difficult medication to come off. The longer you’re on it, and the higher dosage, the more difficult it can be. I have been struggling with extreme drug withdrawal for a year now. Most antipsychotic medications, when coming off cause a condition of tardive dyskinesia, only 3% of people on clozapine get it Unfortunately I have fallen into that 3%. My tongue hangs out of my mouth and I bite my tongue all day. I have fallen into that 3%. And come to find out the Doctor Who put me on clozapine diagnosed me wrong. So right now I am living a hellish life. I was forced by the psychiatrist to come off the drug. In fact I’ve visited six psychiatrist and got the same reply from all of them. In fact they don’t even prescribe it here as they find it a medication of last resort. So if it is your last resort and you find it’s working and you’re functioning well, then by all means stay on it! But believe me if there comes a time to come off of it, you will be sick! In fact it almost cost me my life! The doctor still cannot believe that I am alive exclamation
 
fazza

fazza

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#5
I am so sorry you have had these experiences with this drug. However you are just one of hundreds of thousands of patients that this drug has helped.

Also you state that most people will get tardive dyskinesia when coming off most antipsychotics. This is incorrect.

I had a massive reaction to Flupenthixol. A drug considered quite safe but it caused me stroke like symptoms and facial paralysis.

Moving on to other drugs like lamotragine. This drug can cause you massive skin problems that can lead to death.

Even drugs like ibuprofen for pain relief can cause stomach bleeds and potential death.

But all these problems are rare.

All drugs have the potential to make matters worse and you are right in saying that clozapine should be used when all else fails.

When you consider what this illness can do to us and those closest to us dont you think if all else has failed you should consider clozapine.

If it just killed or ruined the lives of everybody who took it the ask yourself why is it still being prescribed.
 
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Mae2019

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#6
Thank you so much for your reply. I’m very happy for you that this drug works. May I ask please, what is your dosage? I was on it for 15 years at 450 mg daily. I have come to understand by medical professionals that it is an extremely difficult medication to come off. The longer you’re on it, and the higher dosage, the more difficult it can be. I have been struggling with extreme drug withdrawal for a year now. Most antipsychotic medications, when coming off cause a condition of tardive dyskinesia, only 3% of people on clozapine get it Unfortunately I have fallen into that 3%. My tongue hangs out of my mouth and I bite my tongue all day. I have fallen into that 3%. And come to find out the Doctor Who put me on clozapine diagnosed me wrong. So right now I am living a hellish life. I was forced by the psychiatrist to come off the drug. In fact I’ve visited six psychiatrist and got the same reply from all of them. In fact they don’t even prescribe it here as they find it a medication of last resort. So if it is your last resort and you find it’s working and you’re functioning well, then by all means stay on it! But believe me if there comes a time to come off of it, you will be sick! In fact it almost cost me my life! The doctor still cannot believe that I am alive exclamation
I am so sorry you have had these experiences with this drug. However you are just one of hundreds of thousands of patients that this drug has helped.

Also you state that most people will get tardive dyskinesia when coming off most antipsychotics. This is incorrect.

I had a massive reaction to Flupenthixol. A drug considered quite safe but it caused me stroke like symptoms and facial paralysis.

Moving on to other drugs like lamotragine. This drug can cause you massive skin problems that can lead to death.

Even drugs like ibuprofen for pain relief can cause stomach bleeds and potential death.

But all these problems are rare.

All drugs have the potential to make matters worse and you are right in saying that clozapine should be used when all else fails.

When you consider what this illness can do to us and those closest to us dont you think if all else has failed you should consider clozapine.

If it just killed or ruined the lives of everybody who took it the ask yourself why is it still being prescribed.
I don’t know you, but I hear your maturity level and appreciate your feedback. Yes I believe the last resort, clozapine should be used or I would not have been on it. But it is not a drug of choice for a large percentage of doctors across the country. I understand that medication is very important for some people to have a normal life. But, I have done much research and 500,000 people across the country have tardive dyskinesia from antipsychotic, antidepressant and antianxiety medications. And other medications cause it as well.

I have a very strong opinion, and a very deep anger at the pharmaceutical companies because whether you know it or not the bottom line is the almighty buck! I have been to so many doctors and I am telling you that clozapine is a very bad drug whether you want to admit it or not! For a doctor to even prescribe it, they need to have a special license and a special certificate. And as I said it is not an FDA approved drug. It’s not safe Did you know that it is associated with a life threatening disease called agranulocytosis? Which is why legally you have to have a blood test every month? You should see my arms!

Do you know how many children are on medication for ADD? And they have to stay on it because if they come off they develop the tardive dyskinesia. Do you know how many birth defects there are in this country because of women who have to take antipsychotics or antidepressants? I could write you a book. People are mad in America! Doctors are real quick to put people on these medications that are highly addictive. People go to the doctor and say I am having a sad moment and they immediately put them on medication. The majority of doctors do not tell you the side effects of such medications. Especially tardive dyskinesia! Everybody in the world is on drugs, weather they need it or not! In order to prescribe clozapine the doctor has to have a special license and a special certificate and it is not an FDA approved drug. You are one of the FEW that have received benefits and I am very happy for you. Just don’t ever come off you will be in the hospital just like me! I almost died with cholinergic rebound. And after a year I am still sick and was told that it could take 3 years.
 
L

linus

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#7
TD is a side effect to antipsychotics and it may happen as soon as you start it, it’s not related to coming off the drug. And meds usually associate the medication with a drug for the parkinson’s to counter it.
 
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Mae2019

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#8
TD is a side effect to antipsychotics and it may happen as soon as you start it, it’s not related to coming off the drug. And meds usually associate the medication with a drug for the parkinson’s to counter it.
You have a lot to learn about that subject.
 
fazza

fazza

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#9
No I am not one of the few that this drug has helped.......I am one of the many.

I started off on weekly blood test then fortnightly then monthly. It is just part of the monitoring that identifies anything gong wrong like neutropenia which can lead to agranulocytosis.

You state that 500.000 people in america has TD. Well I am 100 percent sure that this is not down to clozapine.

Older anti psychotics can cause TD but newer ones have are better at not causing TD. TD can start at anytime whist taking Anti-psychotics. I know one woman that switched to Geodon and within 3 weeks had massive TD symptoms

Finally the FDA approved the use of clozapine in 1989 for the treatment of schizophrenia.

I will encourauge anyone who is suffering from this terrible life affecting condition to read up the facts. Speak to doctors and even visit clozapine clinics. Some patients will have good reports others will have bad. Bottom line is to not let our personal experiences cloud/worry another persons expectations with quotes like "when you come off it you will be sick" ect ect

Lack of awareness kills more people in the world than clozapine ever will.
 
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Nanischa

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#11
Yes I was was on clozapine that caused me to be a total zombie. My responses were extremely slow. I had Absolutely no sexual desire what so ever! I gained 40 pounds and no matter what diet I was on I could not shed the weight. I also wet the bed every night. My arms are scared from monthly blood draws. When I moved out of state I could not find a doctor to manage my medication-clozapine. It was explained to me that this medication is not approved by the FDA. And was only prescribed for institutionalized schizophrenics when no other medication options worked. I was forced to wean off of clozapine. I developed cholinergic rebound syndrome. It almost cost me my life! It has now been one year and I still am quit sick. Starting on clozapine is difficult in itself but coming off of it is a living hell!! A true night mare that I hope to wake up from soon! Please do yourself a favor and take charge of your life! Because these psychiatrist don’t really care about you! They go to work every day just like everyone else. (Except I don’t work cause I’m to sick from clozapine) Also, these doctors get a handsome cut back from prescribing clozapine.
What is cholonergic rebound and how did it feel and what treatment did u have after having it please reply ! I need to know im quitting olansapine cold turkey and inhave a kid this is why i wonder because it might happen to me.
 
FadeToBlack

FadeToBlack

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#13
Good luck with it. I hear Clozapine is the gold standard!
 
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Shines-Bright

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#14
I've been on clozapine for about 7 years now, in terms of treating MH problems I would say it puts(with my experience as I have friends on the drug as well) you on the mental "straight and narrow". I honestly don't like medication(conventional) generally and originally only started taking it because it was easier taking the tablets than being "jumped" and force medicated anyway. I've been on many medications over the years(for about 14 years), olanzapine, really bad ones like the zuclopthendixle(spelling?). How I'm feeling now with Clozapine is like I wanna straighten myself out in terms of getting into a routine, I feel I've learned the hard way that the simple things in life are what keeps us functioning properly(such as getting up at a reasonable time/washing the dishes). I still don't do these things, which is very frustrating as I know full well that that's what I need to be doing, I can't get out of or retreat to my bed alot and take a back seat in life, it's not a nice place to be. I'm on a really low dose of clozapine now, 150mg a day, my doctor is increasing it to 200mg a day as with my last appointment as i said I was over thinking things and not doing to good mentally. I have diagnosed myself with GAD(not the diagnosis I'm taking clozapine for) and it's literally hell. As for clozapine it landed me in a kind of situation(I'm just describing my feelings now) where you're thinking "right, what now with life"... And my advice for that is build a healthy lifestyle - do what you've always wanted to do but start small, and/or pick up where you left off with the understanding that you have grown much as a person by going through your MH experience. It's really hard and I'm not quite there yet and I came on this forum today cus I'm feeling low and unsure about the future. I know this post wasn't much about clozapine but it's where I'm at, I haven't full insight into my MH experience, as someone said above medications work for some but not others(it could be viewed as a crutch) and ethically I believe it's not right to be forced these things and the power doctors have makes me uncomfortable whether it turned out ok for me or not. Clozapine kinda worked for me, but it's "not" me if you get what I'm saying. Keep going, things always seem to work out.
 

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