Meds. Need help please. I'm a mess.

[Wonderful.Cheese]

I have a pdoc appointment on Friday. I need help. I'm depressed and suicidal. I'm on 3 antipsychotics at max doses. Antipsychotics are what work for me med wise. I'm on Abilify at 35 mg, Seroquel XR at 800 mg, and invega at 12 mg. This is too much. I don't want TD and I have been having trouble swallowing for a while (I just discovered this could be from meds). I'm overmedicated I think. 

I want one AAP and maybe one PRN AAP, or at most two if my pdoc insists. 

I've tried them all. Except rexulti, Vraylar, and clozapine. 

What worked? Zyprexa. It was called my miracle med. I gained almost 100 lbs on the pills. Never gave the zydis a fair chance. Now that I'm on a stimulant like med (nuvigil) and metformin and Topamax will I not really gain weight on the zydis form? Or is it doomed? I'd like to try zyprexa zydis. But I fear diabetes too.

Saphris worked ok but not quite as good as zyprexa but had issues with over eating too. Like sleep eating before I passed out. I would eat a ton. Plus it burned under my tongue (sores). I would try it again but I don't know if we can afford it. Maybe. 

I'm hesitant to say that Seroquel XR or Abilify or invega really work for me since I need all 3 of them and I'm still not stable. Can AAP's poop out? They did work moderately at one time. 

What didn't work? Geodon. I fear the typical meds and clozapine too much to take them. Fanapt. Risperdal in lower doses.  Latuda. 

[looking for answers]

what about lithium, shown to stabilize and decrease suicidal ideations, worked wonders for me ,

 

i know u said only aap work, but have your tried 

 

latuda is doing something for me , but i cant make a judgement yet, its been 3.5 weeks

[Wonderful.Cheese]

20 minutes ago, looking for answers said:

what about lithium, shown to stabilize and decrease suicidal ideations, worked wonders for me ,

 

i know u said only aap work, but have your tried 

 

latuda is doing something for me , but i cant make a judgement yet, its been 3.5 weeks

I have thyroid problems already and I worry lithium would exacerbate that. It scares me. Plus I took a bad OD of it many years ago and just about died. I don't know if they would prescribe it to me again. 

Latuda made me psychotic and manic when taken off Seroquel at the same time. I was on 140 mg of latuda. I ended up hospitalized. 

Maybe the most I can hope for is being depressed and suicidal but not being forced hospitalized. Maybe that's as good as it gets for me. Maybe I can stay safe. Tonight I am forced to.

 

[Butterflykisses]

Hi Cheese.

I have found I only need one AAP: Clozaril. It works wonders on my psychosis. No other AAP/AP worked for me. Clozaril works on my hallucinations, delusions, paranoia, word salad, and negative symptoms. The blood work is annoying at first needing to go weekly, but I now only have to go once a month since its been a year. I would consider it an option, its not as scary as it seems.

[looking for answers]

7 minutes ago, Wonderful.Cheese said:

I have thyroid problems already and I worry lithium would exacerbate that. It scares me. Plus I took a bad OD of it many years ago and just about died. I don't know if they would prescribe it to me again. 

Latuda made me psychotic and manic when taken off Seroquel at the same time. I was on 140 mg of latuda. I ended up hospitalized. 

Maybe the most I can hope for is being depressed and suicidal but not being forced hospitalized. Maybe that's as good as it gets for me. Maybe I can stay safe. Tonight I am forced to.

 

what about clozapine, or zyprexa, even maybe lamictal

[CeremonyNewOrder]

I third clozapine. Anyone who has failed other antipsychotics and has a psychotic disorder should try clozapine. Clozapine saved my life. It reduced my psychotic symptoms by about 80% and it helped my mood and ended the suicidal thoughts. You don't need to be scared of it because you will be strictly monitored on it, which is a pain in the ass but if it makes you stable then its worth all the hassle. The only side effect I got was sedation but my pdoc prescribed me adderall to counter this. I, too was afraid of clozapine but now I wish I was put on it earlier and I believe it should be used more aggressively for treatment resistant schizophrenia/schizoeffective disorder.

[Iceberg]

Cloz all the way. Start really slow and it takes care of some of the scary side effects 

[Wonderful.Cheese]

20 hours ago, Butterflykisses said:

Hi Cheese.

I have found I only need one AAP: Clozaril. It works wonders on my psychosis. No other AAP/AP worked for me. Clozaril works on my hallucinations, delusions, paranoia, word salad, and negative symptoms. The blood work is annoying at first needing to go weekly, but I now only have to go once a month since its been a year. I would consider it an option, its not as scary as it seems.

 

18 hours ago, CeremonyNewOrder said:

I third clozapine. Anyone who has failed other antipsychotics and has a psychotic disorder should try clozapine. Clozapine saved my life. It reduced my psychotic symptoms by about 80% and it helped my mood and ended the suicidal thoughts. You don't need to be scared of it because you will be strictly monitored on it, which is a pain in the ass but if it makes you stable then its worth all the hassle. The only side effect I got was sedation but my pdoc prescribed me adderall to counter this. I, too was afraid of clozapine but now I wish I was put on it earlier and I believe it should be used more aggressively for treatment resistant schizophrenia/schizoeffective disorder.

1 minute ago, Iceberg said:

Cloz all the way. Start really slow and it takes care of some of the scary side effects 

Oh maybe it's time I did try clozapine. Could this really be the answer? My pdoc has mentioned it several times and said it is stronger and I could maybe be on one antipsychotic maybe that way. I am scared but you are right there is strict monitoring weekly at first even. I just wonder if the blood work is going to be really expensive. We can't afford that. Yet, Clozapine itself is generic and inexpensive. I will have to ask. Maybe the clinic I go to does lab work at sliding scale fee. That would be great and convenient. 

How is it side effect wise? Anything I should expect? I can't gain much weight I have a wedding to be in come July. I already have my bridesmaids dress. I'm worried about seizures I have read a few things online. But I'd like to hear from people who actually take it. Sedation I really don't care about I have been on Seroquels and zyprexa etc. I am used to it. It might help my anxiety even. 

[looking for answers]

What disorders are classified as psychotic disorders

[Wonderful.Cheese]

2 minutes ago, looking for answers said:

What disorders are classified as psychotic disorders

Well there are schizophrenia, schizoaffective bipolar type, schizoaffective depressive type, brief psychotic disorder, schizotypal personality disorder, and probably more. I am not the most qualified to list them, sorry. Maybe someone else will come along who knows more. But psychosis can occur in depression, bipolar disorder, etc. as well. But depression and bipolar are mood disorders primarily. 

@looking for answers why do you ask?

[looking for answers]

Got ya, thanks

[Iceberg]

The sedation is intense even compared to zyprexa, I gained a lot more weight on zyprexa than clozaril ...I just haven't been able to lose anything while on it...can cause GI issues like constipation...the more serious stuff is pretty rare 

[CeremonyNewOrder]

1 hour ago, Wonderful.Cheese said:

 

Oh maybe it's time I did try clozapine. Could this really be the answer? My pdoc has mentioned it several times and said it is stronger and I could maybe be on one antipsychotic maybe that way. I am scared but you are right there is strict monitoring weekly at first even. I just wonder if the blood work is going to be really expensive. We can't afford that. Yet, Clozapine itself is generic and inexpensive. I will have to ask. Maybe the clinic I go to does lab work at sliding scale fee. That would be great and convenient. 

How is it side effect wise? Anything I should expect? I can't gain much weight I have a wedding to be in come July. I already have my bridesmaids dress. I'm worried about seizures I have read a few things online. But I'd like to hear from people who actually take it. Sedation I really don't care about I have been on Seroquels and zyprexa etc. I am used to it. It might help my anxiety even. 

Like I said before, I too was scared of taking clozapine and it took me a month to finally agree with my pdoc on taking it. Remember, like every med, just because a side effect is listed doesn't mean it will happen to you. For instance, sedation is the only side effect I've had despite others reporting drooling and constipation. You definitely will have to figure out about the blood tests because you need weekly blood tests at first then every other week and then finally once a month. I can't believe our healthcare system is so fucked up that you may have to pay for blood tests  The blood tests are a pain but since I've been on clozapine (I think its been maybe 3 years now), I haven't been hospitalized or had to go to the ER. I just need occasional tweaks to my combination. I still have fears about what clozapine is doing to me healthwise BUT I'd rather live the rest of my life stable rather than live longer and be consumed with psychosis and mania. Anyways, that's my two cents. You can also find many testimonies online of people who had psychotic disorders and nothing worked until they tried clozapine. Good luck with whatever you decide.

[Wonderful.Cheese]

13 hours ago, CeremonyNewOrder said:

Like I said before, I too was scared of taking clozapine and it took me a month to finally agree with my pdoc on taking it. Remember, like every med, just because a side effect is listed doesn't mean it will happen to you. For instance, sedation is the only side effect I've had despite others reporting drooling and constipation. You definitely will have to figure out about the blood tests because you need weekly blood tests at first then every other week and then finally once a month. I can't believe our healthcare system is so fucked up that you may have to pay for blood tests  The blood tests are a pain but since I've been on clozapine (I think its been maybe 3 years now), I haven't been hospitalized or had to go to the ER. I just need occasional tweaks to my combination. I still have fears about what clozapine is doing to me healthwise BUT I'd rather live the rest of my life stable rather than live longer and be consumed with psychosis and mania. Anyways, that's my two cents. You can also find many testimonies online of people who had psychotic disorders and nothing worked until they tried clozapine. Good luck with whatever you decide.

Thank you so much for all your help. 

Husband doesn't think that the clinic does lab work. He said they do shots (like risperdal or haldol shots, you know). But they send people to other medical clinics to get lab work. Which makes sense because any time I need lab work for my pdoc like annual stuff I am sent elsewhere. 

I mean, I will still ask pdoc but I'm feeling hopeless now.

I think the lab work could cost anywhere from $20 to $45+ a time. My thyroid test is $45 usually. That could be $80 to $180+ a month for labs. We can't afford that even though it might not seem like a huge ton of money. I'm on a tiny SSDI check and husband doesn't make a large hourly wage. Plus our roof is leaking currently. Ugh

[mikl_pls]

What I don't understand is what your pdoc is trying to accomplish with using 3 AAPs: 1 low-potency and 2 high-potencies, one with dopamine partial agonism? Seroquel XR itself at 800 mg is estimated to bind to >90% striatal D2 dopamine receptors... adding TWO MORE antipsychotics, I don't think, won't get those extra <10% D2 receptors. Maybe Abilify at the supratherapeutic 35 mg might, but why not use it by itself if it could get >95%? It seems to me that the only thing adding more AAPs can likely do is cause metabolic problems. Stahl commented on this somewhere in his psychopharmacology book but I can't find it... atypicals bind to the D2 receptors differently than typicals in that atypicals dissociate from the D2 receptor quicker than the typicals do even at higher affinities than a typical (like Risperdal vs. Loxitane). So if you need more dopamine blockade, I imagine switching to a typical, at least, acutely, for a trial, just to see, would be the next step, alongside considering clozapine, which works completely differently altogether than the other antipsychotics.

I just commented all of this on your blog, but I'll comment here as well.

I agree with @Butterflykisses when she mentioned loxapine, it's an oldie but a goodie. Loxapine practically "cured" my psychotic depression that I was having for months in a matter of weeks when taken as needed. (I guess I shouldn't say "cured" though because things are bound to relapse one day or another?) Another oldie but a goodie is Stelazine (trifluoperazine), my very favorite. I've said it all over this board, but it's like my brain glue, but YMMV.

The combination of an AAP + a typical (like loxapine or another) is a common combination technique used among pdocs, with the typical at a low dose usually, if you don't like the idea of just being on a typical AP. Lower doses mean fewer EPS and risk of TD. Usually, they'll use a dopamine partial agonist like Abilify as the AAP and a dopamine antagonist/inverse agonist as the typical (pretty much any of them except Mellaril/thioridazine, which I think might have partial agonist qualities but also isn't used that commonly because of its cardiotoxicity). So you may be able to get rid of the other two AAPs with this combo, but you'll gain a FGA (first-gen AP). Most commonly, Haldol is used... It's not my favorite, it's kind of like an emotional sledgehammer to me. It has been noted to cause depression from mania/hypomania when used in bipolar folks (I would imagine the same or similar would apply to schizoaffective bipolar folks would apply?)

If you wish to try the newer ones again like Saphris, or try a new one you haven't tried before like Rexulti or Vraylar, you could always get enrolled in a patient assistance program where they deliver the medicine to you for free if you qualify financially.

I can't remember what meds you're on since I'm not looking at your signature, but I'll go take a gander at your thread in just a sec, but carbamazepine is used frequently in treatment-resistant psychosis, I believe. So is lamotrigine, but it's mostly for its mood stabilizing properties. Carbamazepine would require some blood testing but not NEARLY as much as clozapine.

[browri]

@Wonderful.Cheese I second @mikl_pls. The combination of an atypical with a typical would most likely be the best bet at this point. @mikl_pls and I have had pretty good experiences with loxapine at <50mg. It behaves more as an atypical at those doses and is very similar in structure and binding affinity to clozapine, olanzapine, and quetiapine. I went off of it because of its activating effects on the adrenergic system similar to quetiapine. @mikl_pls also loves his Stelazine (trifluoperazine).

If you haven't already tried it, cariprazine (Vraylar) may be a good option for you. If you can tolerate the current combo of aripiprazole/paliperidone/quetiapine/olanzapine without EPS, then you shouldn't have an issue with cariprazine. It has a stronger affinity for the dopamine receptors than serotonin like brexpiprazole and aripiprazole. Should have less of an impact on weight than brexpiprazole and around the same as aripiprazole. 3-6mg of cariprazine and 10-20mg of loxapine could be a solid combo.

No matter how you dice it, long-term use of that many even atypical APs at max doses like that can't possibly be good. Dr. Stahl at this point likely would have moved on.