Clozapine advice needed urgently!

I am imminently due to start a treatment of clozapine after several failed successes of alternative medication. I am a full time student (mature student) I also work part time, I go to the gym daily and at times social, albeit, not as social as I once was. Today, I met with my support worker who provided me with more information regarding clozapine and the side affects, which to be honest scares me. But, I am still eager to pursue the treatment as it may change my life for the better.

I submit this post solely for the purpose of insight and to prepare and protect myself. I am looking to hear from people who have used this medication who would be kind enough to share their thoughts and experiences with me. Regardless of how good or bad, I am only interested in the truth, that will enable me to form a plan while taking the medication.

Thank you

4 Likes

Clozapine helps you feel calmer
I’m on 325
200 at night
I sleep like a dream every night
I have to put disposable sheets on bed as bed wetting at night
I have gained weight but manageable with I do a lot of walking and eat lots fruits vegetables
High fibre diet
It hasn’t cleared up all of my symptoms
Sometimes I experience breakthrough symptoms paranoia and voices I am unable to do paid work
But I volunteer every morning in different organisation
I do ok but I am unable to do much social stuff or work paid
I have parents for support but no freind go out with
It may be different for you considering your circumstances
Some people do very well on it and get back to work
I just telling you honestly my experience

6 Likes

Thank you very much for this. How long have you been on clozapine?

A good ten years now
I take seroxat also

3 Likes

And the bed wetting is consistent? It is not just a short term side effect?

It is persistent
To tell the truth I don’t really notice whether it’s still doing it but it’s not too wet
You also have to turn up for blood test once a month

3 Likes

Knowing what you know now… would you recommend someone to participate in the Clozapine treatment?

1 Like

If I could go back I might have been better off on sulpiride although that stopped my periods so not sure
Can’t afford another relapse

I have tried all types of medication, this is my last. Now reading what I have done so on this blog about Clozapine, I remain unsure as to whether I shall pursue…

Well as I say the nurses told me that a lot of people on clozapine get back to work
What were the problems you had with other drugs
Side effects or breakthrough symptoms or both?

2 Likes

You also have to have regular bloodwork (FWBC) and serum levels done at regular intervals, which is why despite doing therapy for needle phobia I never changed to it…

It’s known for high sedation and weight gain, but I’m on Olanzapine so never thought that it would be a problem.

As well as bed wetting, some of my friends had problems drooling especially asleep, but you can take something for the drooling!

Just bear in mind it might not be a magic bullet and get rid of all of your symptoms, considering no other meds have worked fully… Otherwise I might be more receptive to the idea of changing to it!

2 Likes

My other symptoms included night sweats, increases paranoia, weight gain, fatigue, constipation, increased gut, restless leg syndrome, memory loss, high sedation, the inability to think clearly or articulate myself, these were the main.

Now my concern with the Clozapine is not only the above, but the bed wetting or becoming zombified

What are your thoughts? I have a few days to make a decision

Have you taken Clozapine?

I have noticed that on clozapine I am most balanced compared to the other medications
I am able to read and look after myself
I live independently
Of course if you try it you run the risk of an allergic reaction with the white blood cells but you are more likely not to get that
Maybe give it a go and keep your fingers crossed and have an alternative back up plan if it doesn’t work out

2 Likes

Is it worth the risk?

I don’t know
What age are you
If you are young it might be worth the risk as time will be on your side
They try to monitor the dose too as if the serum levels are too high they told me the risk of fits this means they can’t put you on too high a dose
Whereas on the other medications they never mentioned this
Maybe you could talk to someone who has had great success with clozapine because I haven’t to be honest

My life has improved by the way I get out every day
I live independently
But there’s a lot of stuff I just can’t do and it’s frustrating

I am 32 years of age. I mainly suffer from paranoia delusions. The voices, I have not heard in some time

I’ve been on it for a year now… the blood work in the beginning stunk being once a week but at the 6 month it went to 2 times a month, now at 1 a month… the only side effect I have is drooling, like major drooling… sometimes I wake up and can’t breath and chock on my drool… I’m also on 2 constipation medicine to stop that, and heart burn med… I don’t know if that’s from the drug or not…

As for how well it works it’s taken me away from talking aloud to voices and them talking out loud to me from my mouth… there still there but on a back burner… I never faced much paranoia so I don’t know how it helps that… my big concern is it hasn’t taken away the delusions, but my pdoc is increasing my dose the next time I get blood drawn because of this…

I’d recommend it, I’ve tried 5 other anti psychotics, and none of them came close to the clarity I feel on this one…

2 Likes

I think you should go for it it is worth the try if it gave you your mental health

1 Like