When is it time to push for Clozapine

My daughter has been on Risperdal, and about 4 anxiety medicaitons…and none of them touch her symptoms with a 10 foot pole. Any advice out there on how to push the psychiatrist to take a more aggressive stance in switching out stuff that’s not working? She’s been on these for 3 months now, and there is literally no difference. Ideas?

1 Like

Typically, the psychiatric world wants to try 2-5 (or more) newer medications before deferring to an older medication like clozapine. I didn’t even know about clozapine when my son was diagnosed 10+ years ago. He tried about 5 or 6 meds and none of them helped and finally his doctor brought up the clozapine out of desperation, I think. I was at first concerned about the regular blood draws but once he got use to those and I started seeing the remarkable improvements begin with him, about 3-6 months into the start, I was sold. I would recommend starting advocating for it now and hopefully your daughter’s doctor is familiar with the benefits of the medication and will honor your request. If the medication works for the patient, then the medication works very slowly but very steadily, and it saved my son’s life in my opinion. Good luck going forward. I wish you the best.

Not all doctors want to prescribe Clozapine because they have to be in a register and make reports. When I looked for a psychiatrist for my son, who is not in Clozapine, I made sure the drs were willing to prescribe it and in the register. I did not want to start seeing a dr that is not willing to prescribe one of the best medicine for his condition. Ask your dr. The nonprofit organization Curesz advocates for more drs to prescribe Clozapine, and have a map with drs that do it.

2 Likes

Not all people respond to the same med. Clozapine didn’t work well for me, but Olanzapine helped. Give it time and try out other meds. Most people will respond to at least one and will recover.

2 Likes

While I have no experience with Clozapine, an observation I’ve made is that many psychiatrists have “pet” medications that they prefer and I speculate they tend to run through a sequence of their “greatest hits” until they find one that works.

When I’ve switched psychiatrists, usually the new one wants to change to a different medication. It seems more like they choose favorites than a “not invented here” syndrome. Knowing this tendency, I expect changing up doctors frequently might speed up this process. The downside, of course, is a lack of continuity of care and possible added stress to your daughter adjusting to a change of doctors.

While I’m normally not a fan of drug-seeking behaviors, if you want to go down the road to Clozapine, you are far more likely to get it prescribed by a doctor who’s experienced and comfortable with this RX. So you may want to cultivate local contacts in support groups to see if someone can refer you to a doctor known to prescribe it.

Edit: I wasn’t aware of the register mentioned by @hopeisahead which would be a simpler approach to finding a doctor. Cultivating local contacts may yield further details about a doctor’s “soft skills” and typical process, so I’d encourage a bit of both tactics.

2 Likes

Thanks Catherine. Yeah, we are on our 3rd antipsychotic med and its not looking good. ARGH. I just hate sitting here watching my daughter waste away while we wait and wait and wait…

2 Likes

Thanks @hopeisahead - I have reached out to Curesz to see what I can get!!

Thanks @Tukey…I will add that as a medicine to suggest after this one fails!

2 Likes

Thanks @Maggotbrane – agreed. This whole process is equal parts science + magic + perservarance + agility + luck.

You might want to check out Bethany Yeiser website: CureSZ. Julie1

1 Like

Our daughter just started Clozapine. She has Bipolar 1 often with psychosis. She’s 40 many hospitalizations. We know a few middle aged adults and Clozapine has eorked miracles forthrm. It’s used much more in other countries.
She was put on it after a recent 3 mo. hospitization. I pushed for it. Unfortunately she is still on a once a month Invega shot and lamictal. She has a new Clozapine certified Dr. who she’s seen twice and whom told her she’ll only see her once a month for 15 min and will not return calls. Looking for new Dr… we can private pay but actually Chris wants us to start backing off some. She has has a MSSW insocial work but has never worked.
Chris was on lithium for 22 years. Her kidneys were failing. Actually She caught it reading her blood labs in the portal
She had been in kidney failure for 10 mos. Her Dr and PCP NEVER caught it.
The system is terrible. Good luck

The system IS terrible. Beyond appalling. Those are the same meds my daughter are on - and they don’t do a damn thing. Literally nothing. Ugggghhhh

Reading American Cartel… about the DEA’s battle with opiods… cannot put this book down. I have thought for many years we need to litigate

America works through lawsuits. The corruption in our government… both parties is a road block to justice. So you sue. Addiction and mental illness are not warm and fuzzy illnesses…
Oh yes, many …most other illnesses create a sense of sympathy with the public… NOT mental illness and/or addiction

This is the only way… American Cartel is a book that is almost a playbook how this should be done… we need to find the lawyers with the commitment to do this