Hi everyone, it has been 3 weeks since my sister has been hospitalised as she was experiencing a relapse from her schizophrenia. I know there are quite a few information out there both positive and negative, in regards to Clozapine so I wanted to reach out to this forum to see what others might suggest. I’m not asking for medical advice but rather more wanted to know what people think and perhaps with the effects of Olanzapine working well for you and how long it took?
I understand medication varies depending on the person, but I’m in a slight dilemma as the doctors are strongly advocating to change to Clozapine, but my parents are hesistant with doing so as it will require the frequent blood tests and it is not likely to ever not take Clozapine, whereas for Olanzapine depending on your condition you are able to work with the doctor to reduce your dosage and eventually stop olanzapine. (My source for this was Olanzapine | Atypical Antipsychotic Use & Side Effects | YoungMinds)
Since she entered the hospital, the doctors had increased her original dosage of 10mg Olanzapine to 15mg, and now 20mg. But they say that it does not seem to have reduced my sister’s current psychosis i.e. her delusions that her family is trying to hurt her and that they are not her real family. Her false beliefs this time round are unlike her previous hospitalisation. In her previous last two hospitalisation her belief was that her friends were trying to harm her but it seemed to have changed this time round.
According to the doctors they have also included another anti-psychotic to try to help reduce her delusions about her family (they said it was ‘anti-cyprus’ but I can’t seem to find anything online with a medicine with that name so I’ll need to ask the doctor again. But apparently the side-effect of the second medicine causes my sister to involuntarily frequently look up).
The doctors seem to be strongly suggesting the Clozapine option as they said it’s the best option since Olanzapine does not seem to be working on her family delusions. But I want to ask in the forum, should I suggest to the doctors to give more time to see if the Olanzapine will work i.e. just another 1-2 weeks to gauge if the medicine is just making slow progress or if her body really has become resistant to it? Or should we just go straight to the Clozapine option?
The doctors did say that they were afraid if we waited another 1-2 weeks, if her body is really resistant to it, her delusions about her family might get stronger and that might become harder to ‘fix’?
I understand both the doctors and my parent’s concerns and perspective so I’m trying to figure out what would be the best solution as we all want what’s best for my sister.
Olanzapine is a strong drug. I was on it and it removed all my delusions. I do think it is strange that only after 3 weeks of increased dosage the doctor wants to change it to Clozapine. It seems more to be Clozapine is usually used as a last option. Has she tried out other anti-psychotics?
I agree with @Lirik they seem to be giving up on Olanzapine rather quickly. Frankly I’d consider getting off of antipsychotics in the future a pipe dream for someone prone to relapse unless you don’t mind it recurring or denial is a meaningful lifestyle choice. A low dose of AP medication once stable and regular psychiatric visits are cheap insurance in my opinion.
My understanding is Clozapine is more commonly prescribed in the UK and EU. It might be because of reduced liability concerns and more universal access to affordable health care as compared to the US. Consider other medications, but it seems folly betting on the come for getting off of Olanzapine if it’s not effective in the first place
Maybe this was aripiprazole? Aka Abilify, it’s been marketed as an add-on in the States. It’s the only medication that I can think of that might be misheard this way.
Hi @Lirik and @Maggotbrane, first off thank you so much responding to my post! I really appreciate your shared opinion >_< Also, I did confirm that it was Abilify (Aripiprazole), thank you @Maggotbrane!
@Lirik, My sister in the past has tried Latuda (lurasidone hydrochloride) and Ability (aripiprazole), along with Benztropine (Benztrop) as an add-on to reduce the shaky hands and looking up side-effects, but it was later changed to Olanzapine which worked really well for her well for at least 3 years. The doctors haven’t tried anything else; I’m not sure if trying the above different medicine is considered as trying enough before going to Clozapine?
Now while she’s in hospital, they’ve only focused on using the 20mg of Olanzapine plus the add-on of Abilify to try see how she reacts. So it’s literally been like first week was 15mg, and then the second and third week was 20mg of Olanzapine. I looked online and it did say to give it at least 4-6 weeks? My sister did relapse due to not taking her medicine (we thought she stopped taking medicine 2 weeks prior to her hospitalisation but according to her friends, she’s been pretending to not eat her medicine for at least 1-2 months).
My family and I found it a bit strange too with how they seemed rushed and wanted to try Clozapine as like you mentioned, it’s typically the last option suggested. (I think it might be due to limited spaces in the hospital due to COVID…) To be honest, we just prefer Olanzapine as we know my sister utterly hates taking blood tests so we don’t want that additional stress factor agitating or upsetting her in any way or form. Even a normal yearly blood tests upsets her so when I imagine frequent blood tests… I can’t imagine the stress she’ll feel.
Keeping in mind that everyone is different and reacts to medications differently…My very best advice is to listen to those recommending the clozapine. It takes patience and time for the clozapine to show its full and best affects and it takes time for the initial side affects to wear off but they do wear off at least they did for my son and my son is doing extremely well now after 10 years on the drug. He still does the monthly blood tests even though they are not required during the pandemic. He chooses to continue because he said it eases his mind to know his bloodwork is still good. Clozapine saved my son’s life when no other medication could. He has not had any voices or delusions in a very long time.
I second what @Catherine says about Clozapine. Although I’ve never taken it, it’s one of the few drugs with a largely positive reputation on this forum. In many ways being in Europe gives you an advantage, as most of the folks in the US have to fight to get it, since it’s considered a drug of last resort as @Lirik mentioned. It’s one of the few drugs that gets Rip Van Winkle reports of recovery. It’s also reported to help with negative symptoms which are generally stubborn with other drugs.
You may see fewer posts discussing stability on the drug for the simple reason that people generally only post when they have troubles. If you search the forum carefully you’ll see many tips about the drug and success stories after struggling to get it for their loved ones.
Hi @Catherine, thank you for sharing your opinion with me. We will most likely be following the doctor’s advice (since they are the experts after all) but we will still share any concerns that we have with them as well. I’m glad to hear that Clozapine has been the best option for your son! I hope that he continues to stay well!! Please take care of yourself too and once again thank you for your response
Hi @Maggotbrane, I’ve noticed the highly positive reviews about Clozapine in this forum too! Will definitely take note of the tips and success stories/strategies in the case that we do go ahead with Clozapine to ensure that it’s a smoother journey for my sister and her recovery. Once again, thank you so much for sharing your opinion with me! I really appreciate it
Clozapine was a true “game changer” for my son also. He was prescribed numerous different medications before without the success we see now. Currently, he takes 200 mg. daily which has been titrated down from a higher dosage. I would like to know if that is considered about average if anyone on this forum can advise me. Thanks!
