4 options, pdoc tomorrow, nervous! Help is appreciated!

[Wonderful.Cheese]

I’m worried about weight gain with rexulti and worried because what if it is similar to Abilify but just has weight gain side effect? So that is option #1. To swap Abilify for rexulti. Which I’m nervous about. I can’t gain weight. And I’m worried pdoc won’t swap Abilify.

#2 would be to try Invega shot form or pill again and take zyprexa Zydis as a PRN again for emergency episodes just to get me through them. I did good with psychosis on Invega. I got off of it because I was on 3 AAPs and that was the most recently added. I’m feeling suddenly not keen about zyprexa long term. I don’t want diabetes. Pdoc has wanted me to try Invega shots before.

#3 Prozac? But I don’t tolerate AD’s. Never really have. But since I’m on zyprexa? Symbyax combo? I don’t know! I’m worried about increasing anxiety. And mania risk mostly. I tend towards that.

#4 loxapine. But I’m terrified of typicals. I fear TD. Badly. 

 

I’m almost tempted with option #2.  But #1? But I don’t want to deteriorate. What if rexulti is a different beast and doesn’t cause me weight gain? The voices are screwing with me tonight bad. I don’t know! I’m sorry. 

[argh]

.

Edited September 20, 2020 by argh

[jarn]

I guess I was fairly treatment resistant?  I never thought of myself that way but I kept running through AAPs so I guess so.  Loxapine really has been a dream for me.  And Cheese, since you tend to agitation - that made a huuuuuuuge difference.  I would look at the Invega shot or the loxapine, but that's just me.  

[argh]

.

Edited September 20, 2020 by argh

[Iceberg]

3 hours ago, Wonderful.Cheese said:

I’m worried about weight gain with rexulti and worried because what if it is similar to Abilify but just has weight gain side effect? So that is option #1. To swap Abilify for rexulti. Which I’m nervous about. I can’t gain weight. And I’m worried pdoc won’t swap Abilify.

#2 would be to try Invega shot form or pill again and take zyprexa Zydis as a PRN again for emergency episodes just to get me through them. I did good with psychosis on Invega. I got off of it because I was on 3 AAPs and that was the most recently added. I’m feeling suddenly not keen about zyprexa long term. I don’t want diabetes. Pdoc has wanted me to try Invega shots before.

#3 Prozac? But I don’t tolerate AD’s. Never really have. But since I’m on zyprexa? Symbyax combo? I don’t know! I’m worried about increasing anxiety. And mania risk mostly. I tend towards that.

#4 loxapine. But I’m terrified of typicals. I fear TD. Badly. 

 

I’m almost tempted with option #2.  But #1? But I don’t want to deteriorate. What if rexulti is a different beast and doesn’t cause me weight gain? The voices are screwing with me tonight bad. I don’t know! I’m sorry. 

Were u maxed on invega? 

[Wonderful.Cheese]

10 hours ago, argh said:

I'd scratch 3 as while it is approved, you tend to go manic fast. Like the lightbox did you in iirc...so a legit SSRI probably isn't th best idea.

Rexulti isn't supposedly as effective as an antimanic vs abilify. Everyone's head is different however.

If you know you did well with invega maybe give that a go while slowly titrating the zyprexa down.

Back to your 3 AAP at the same time concern. Would a single ap like loxapine assuming you can go monotherapy, have less of a chance to cause TD than 3x AAP? Weight gain might be less of a problem too.

Maybe Mike can weigh in.

I think jarn might have also been treatment resistant but loxapine has been working for her.

Did you go through all the other usual suspects for antimanic? Depakote and tegretol?

 

 

Thanks argh. I agree about the SSRI. I also want to try my light box again but I probably shouldn’t do that either. 

I also worry about the no mania indication for rexulti. If it’s going to be like latuda (also no mania help), than no that probably isn’t going to go so well. 

I hope my pdoc would actually take me off zyprexa and put it back to PRN status at 10 mg x2 a day. Then I’d take it for episodes only. The only concern with being on Invega and Abilify is sleep. I would hope I’d be ok, but what if I can’t sleep at night? I’m used to hard hitters like seroquel, zyprexa, clozapine, etc. knocking me out at bedtime. I’d maybe need something for sleep like trazodone or lunesta again. Ugh. But you never know.

Loxapine my pdoc would probably want to high dose me. For haldol she started at 15 mg total a day. And I don’t think she’d let me do monotherapy with APs. But it’s worth asking about.

I have not tried depakote nor Tegretol. 

[Wonderful.Cheese]

9 hours ago, jarn said:

I guess I was fairly treatment resistant?  I never thought of myself that way but I kept running through AAPs so I guess so.  Loxapine really has been a dream for me.  And Cheese, since you tend to agitation - that made a huuuuuuuge difference.  I would look at the Invega shot or the loxapine, but that's just me.  

Thanks jarn. I appreciate your thoughts. I will ask about those two options today.

It would be so very nice to say goodbye to the agitation. I just worry my pdoc would make me stay on another AAP with the loxapine and high dose it. But you never know. I could always request we start low and slow. 

9 hours ago, argh said:

I think the definition of treatment resistant is failing 3 or more of the same drug class. I think most of us here are treatment resistant.

Yes, unfortunately I believe this is so. I think most of us here are treatment resistant too. Sad, but true.

[Wonderful.Cheese]

9 hours ago, Iceberg said:

Were u maxed on invega? 

Hmm. Maybe? Maybe towards the very end? I wasn’t on the max dose long enough though to see what it could do for me though. I don’t know if I ever tried 12 mg. Or if it was only 6 mg. You’ve stumped me!

That was when I was on the 3 AAP’s and had had enough and told her something had to be done. So then she trialed me on clozapine which I had a paradoxical reaction to along with bad side effects. And now after vraylar, I’m on zyprexa Zydis currently.

[mikl_pls]

12 hours ago, Wonderful.Cheese said:

I’m worried about weight gain with rexulti and worried because what if it is similar to Abilify but just has weight gain side effect? So that is option #1. To swap Abilify for rexulti. Which I’m nervous about. I can’t gain weight. And I’m worried pdoc won’t swap Abilify.

I can tell you from my experience, watching my mom's and my best friend's, @THE_REAL_Bryan's, experiences first hand that Abilify is nothing like Rexulti. Some may say it is, but everyone is different. @THE_REAL_Bryan actually lost weight on Rexulti but gained on Abilify, which is rather paradoxical. If you think Rexulti might be a good candidate for you to try, just try it, and if you notice you start to gain weight, you can always go back to Abilify. Keep in mind though that the Abilify will take a couple of weeks or so to get fully out of your system and for the Rexulti to fully reach steady state at whatever dosage you're taking it, so you may need really about a month to fully assess its effects as you will be titrating up to the max dose most likely (if your pdoc goes for it... which let's hope she's open to the idea!)

12 hours ago, Wonderful.Cheese said:

#2 would be to try Invega shot form or pill again and take zyprexa Zydis as a PRN again for emergency episodes just to get me through them. I did good with psychosis on Invega. I got off of it because I was on 3 AAPs and that was the most recently added. I’m feeling suddenly not keen about zyprexa long term. I don’t want diabetes. Pdoc has wanted me to try Invega shots before.

I never thought of giving the Invega depot shot a try with your combo... Invega Sustenna is the monthly version, and Invega Trinza is the every three month version, isn't that right? Which one would you want to go for? Of course oral Invega is good too. I've personally never taken Invega (my pdoc would never let me because of the risk of hyperprolactinemia) but if it worked well for you, it may be good to go back to it until you are stabilized.

12 hours ago, Wonderful.Cheese said:

#3 Prozac? But I don’t tolerate AD’s. Never really have. But since I’m on zyprexa? Symbyax combo? I don’t know! I’m worried about increasing anxiety. And mania risk mostly. I tend towards that.

I'm going to have to agree with @argh about this. I mean, if you try an antidepressant, probably a sub-sub-subtherapeutic dose of a very mild SSRI, like 2.5 mg to 5 mg Celexa, or just any SSRI that's splittable, like 6.25-12.5 mg Zoloft, 6.25-12.5 mg Luvox, etc., or instant release Effexor tablets 12.5-25 mg? Just an idea, probably a silly one lol.

What about raising your Nuvigil to the 250 mg? Do you think that might help you with depression? On the other hand, do you think Nuvigil might be what's causing you to be so treatment resistant? It is after all a dopamine D2 agonist and a very weak dopamine reuptake inhibitor. So maybe going down to 150 mg or something and adding something to help with depression to make up for it? Perhaps going to Lamictal 400 mg?

12 hours ago, Wonderful.Cheese said:

#4 loxapine. But I’m terrified of typicals. I fear TD. Badly.

Loxapine is quite an innocuous typical. IF you start to get TD, and that's a BIG if, you will almost certainly notice right away and can stop the medicine before it becomes permanent. A friend of mine got TD from Vraylar and she stopped it and it went away. I also agree with @argh in that a single AP/AAP (or two even) would probably be better than having three on board for the risk of TD and weight gain. I mean, at some point, adding more antipsychotics is like pissing in an ocean of piss: you only have so many dopamine receptors to block, and adding more blockade is just going to increase side effects, risk of TD and EPS, and cause unwanted weight gain. I think loxapine would also be worth a try.

32 minutes ago, Wonderful.Cheese said:

I also worry about the no mania indication for rexulti. If it’s going to be like latuda (also no mania help), than no that probably isn’t going to go so well.

I think the reason there isn't a mania indication for Rexulti is simply because they didn't market it for that/do any clinical trials for that. I don't think it necessarily means it won't help with mania. It has lower intrinsic activity at the D2 receptors than Abilify, meaning it stimulates them less than Abilify, yet Abilify is approved for mixed/manic episodes.

34 minutes ago, Wonderful.Cheese said:

Loxapine my pdoc would probably want to high dose me. For haldol she started at 15 mg total a day. And I don’t think she’d let me do monotherapy with APs. But it’s worth asking about.

You could express your concern for EPS and TD and maybe she might listen, right? Or no? I don't know your pdoc well, but she sounds like she can be a bitch. (Pardon me for saying that...) 

35 minutes ago, Wonderful.Cheese said:

I have not tried depakote nor Tegretol.

If weight gain is something you want to avoid, Depakote is also definitely something you want to avoid.

Tegretol is generally weight neutral, but you would have to double the dose of all your meds because it's a CYP450 inducer, meaning it increases the clearance of all your meds metabolized by the CYP450 system. You Lamictal would have to be doubled to 600 mg, your Abilify doubled to 70 mg, Zyprexa to 40 mg, etc.... Have you ever tried Trileptal? It's a lot like Tegretol but doesn't induce the CYP450 system nearly as much and as such doesn't require dose adjustments. It also is a lot milder on side effects, like bone marrow suppression and stuff like that.

 

[CrazyRedhead]

16 hours ago, Wonderful.Cheese said:

I’m almost tempted with option #2.  But #1? But I don’t want to deteriorate. What if rexulti is a different beast and doesn’t cause me weight gain? The voices are screwing with me tonight bad. I don’t know! I’m sorry. 

Sounds like you would be the most comfortable with option #2......This is just my 2 cents, but I always go with what I'm comfortable with.

[argh]

.

Edited September 20, 2020 by argh

[notloki]

Remember you listed only the options you know about, your doctor may have others that maybe better. Make sure your doctor is onboard with any changes you make.

[Wonderful.Cheese]

6 hours ago, mikl_pls said:

I can tell you from my experience, watching my mom's and my best friend's, @THE_REAL_Bryan's, experiences first hand that Abilify is nothing like Rexulti. Some may say it is, but everyone is different. @THE_REAL_Bryan actually lost weight on Rexulti but gained on Abilify, which is rather paradoxical. If you think Rexulti might be a good candidate for you to try, just try it, and if you notice you start to gain weight, you can always go back to Abilify. Keep in mind though that the Abilify will take a couple of weeks or so to get fully out of your system and for the Rexulti to fully reach steady state at whatever dosage you're taking it, so you may need really about a month to fully assess its effects as you will be titrating up to the max dose most likely (if your pdoc goes for it... which let's hope she's open to the idea!)

I never thought of giving the Invega depot shot a try with your combo... Invega Sustenna is the monthly version, and Invega Trinza is the every three month version, isn't that right? Which one would you want to go for? Of course oral Invega is good too. I've personally never taken Invega (my pdoc would never let me because of the risk of hyperprolactinemia) but if it worked well for you, it may be good to go back to it until you are stabilized.

I'm going to have to agree with @argh about this. I mean, if you try an antidepressant, probably a sub-sub-subtherapeutic dose of a very mild SSRI, like 2.5 mg to 5 mg Celexa, or just any SSRI that's splittable, like 6.25-12.5 mg Zoloft, 6.25-12.5 mg Luvox, etc., or instant release Effexor tablets 12.5-25 mg? Just an idea, probably a silly one lol.

What about raising your Nuvigil to the 250 mg? Do you think that might help you with depression? On the other hand, do you think Nuvigil might be what's causing you to be so treatment resistant? It is after all a dopamine D2 agonist and a very weak dopamine reuptake inhibitor. So maybe going down to 150 mg or something and adding something to help with depression to make up for it? Perhaps going to Lamictal 400 mg?

Loxapine is quite an innocuous typical. IF you start to get TD, and that's a BIG if, you will almost certainly notice right away and can stop the medicine before it becomes permanent. A friend of mine got TD from Vraylar and she stopped it and it went away. I also agree with @argh in that a single AP/AAP (or two even) would probably be better than having three on board for the risk of TD and weight gain. I mean, at some point, adding more antipsychotics is like pissing in an ocean of piss: you only have so many dopamine receptors to block, and adding more blockade is just going to increase side effects, risk of TD and EPS, and cause unwanted weight gain. I think loxapine would also be worth a try.

I think the reason there isn't a mania indication for Rexulti is simply because they didn't market it for that/do any clinical trials for that. I don't think it necessarily means it won't help with mania. It has lower intrinsic activity at the D2 receptors than Abilify, meaning it stimulates them less than Abilify, yet Abilify is approved for mixed/manic episodes.

You could express your concern for EPS and TD and maybe she might listen, right? Or no? I don't know your pdoc well, but she sounds like she can be a bitch. (Pardon me for saying that...) 

If weight gain is something you want to avoid, Depakote is also definitely something you want to avoid.

Tegretol is generally weight neutral, but you would have to double the dose of all your meds because it's a CYP450 inducer, meaning it increases the clearance of all your meds metabolized by the CYP450 system. You Lamictal would have to be doubled to 600 mg, your Abilify doubled to 70 mg, Zyprexa to 40 mg, etc.... Have you ever tried Trileptal? It's a lot like Tegretol but doesn't induce the CYP450 system nearly as much and as such doesn't require dose adjustments. It also is a lot milder on side effects, like bone marrow suppression and stuff like that.

 

Thank you Mike. I’m sorry if I wear you out. I always appreciate your help! I see pdoc in under 2 hours now. 

I printed a rexulti savings card just in case. The pharmacy tech said sternly to me that I was “breaking the law” basically because we have federal *private* insurance the last time I used a savings card with my vraylar trial and it went through and saved me a ton of money. Anyway, I called the rexulti phone line and they said I was not doing anything wrong and it’s ok to use it and try it. So blah to the pharmacy tech. 

I will also see what pdoc thinks regarding Invega but I don’t know. Will I sleep?

And interesting about nuvigil. I take it because I didn’t respond to CPAP usage (which I use anyway still, ugh, It didn’t help with the horrid fatigue). Plus there are other suspected other sleep disorders. I may try a trial without it. If my sleep dr agrees. But I don’t want her to think I don’t need it or that it’s making me worse if it isn’t. I can’t go back to sleeping life away. That’s no life. But I don’t want it to be causing things either.hmmmm 

I have much to think about.

 

2 hours ago, CrazyRedhead said:

Sounds like you would be the most comfortable with option #2......This is just my 2 cents, but I always go with what I'm comfortable with.

I am most comfortable with #2. You are correct. Thanks CRH. I will definitely keep this in mind. 

[Wonderful.Cheese]

34 minutes ago, argh said:

Now that Mike’s mentioned it, i would drop the nuvigil first as you are extremely dopamine sensitive. 
being manic for weeks on end the crashing to depression is probably a large part of your fatigue. 
there will be an energy crash initially but is sleep a bit more any worse than psychosis in it’s current form?
I don’t cycle or hit peaks anywhere close to yours but when i got my mood mostly stable, the fatigue largely went away. 

Gosh. I can try without Nuvigil but it won’t be easy. I sleep my life away without it. But what’s better? Asleep and at peace or awake and MI monsters? But you are right, it could be causing some things. I will see what my sleep dr thinks. I don’t want her to think I don’t need it or that it is causing things if it isn’t though. Always a risk. I’ve been on it for I don’t know, maybe 4 years? Maybe?

[Wonderful.Cheese]

18 minutes ago, notloki said:

Remember you listed only the options you know about, your doctor may have others that maybe better. Make sure your doctor is onboard with any changes you make.

You are correct. She may have something up her sleeve that I don’t even know anything about. I will not make any changes without her approval. I don’t do that with one exception.....

With vraylar and I couldn’t get her nurse to call me back. (I have no way of contacting my pdoc directly, I have to go through her nurse) I was having non stop gut issues and panic attacks. I had to stop that on my own because I couldn’t take the gut issues any longer. And it stays in your system for a loooooong time.

The nurse never even relayed my messages to my pdoc, nor called me back. I called maybe 2 - 3 different times about this. And I don’t even call ever for anything unless it’s extremely urgent/an emergency, we’re talking less than 2 - 3 times a year if that even. I wait for appointments instead because she makes me feel like a bother.

 I don’t know why nurse is against me and doesn’t like me. I’ve never done anything to her but be polite and friendly. 

[Wonderful.Cheese]

So Pdoc prescribed 1 mg rexulti for 4 days and then 2 mg rexulti. I see her in a week! She actually had available appointments that soon!

All other meds will remain the same for now to see if I tolerate the rexulti (Abilify 30 mg, Zyprexa Zydis 20 mg, Lamictal 300 mg, Klonopin 3 mg, Nuvigil 200 mg, Synthroid 50 mcg, Yaz, Metformin 2,000 mg, Topamax 200 mg, Flonase). But I didn’t know or think you could take Abilify and rexulti at the same time? A little nervous for that. I forgot to ask.

At first she wanted to increase my zyprexa to 30 mg. But I got up the courage and brought up rexulti and asked if it was any good or just the same as Abilify and if she had other patients on it who did well. She said we can try that instead of the zyprexa increase. 

And it took a long time at the pharmacy and I don’t understand what they did or how they did it but somehow I ended up with 4, 1 mg pills and only 18, 2 mg pills? But $0 first fill copay with that coupon. Then it will be expensive but with our mail order it is better than $XXX for a 30 day supply. 

Thanks to everyone for all the help and gentle guidance. I appreciate it so much.

Edited September 28, 2019 by Wonderful.Cheese

[Iceberg]

@Wonderful.Cheese I think taking them together will be ok short term as part of a cross-titrations as long as it’s not the longer term strategy 

[Wonderful.Cheese]

11 hours ago, Iceberg said:

@Wonderful.Cheese I think taking them together will be ok short term as part of a cross-titrations as long as it’s not the longer term strategy 

Thanks iceberg! Yes, I believe it is short term taking them together just to make sure I tolerate the rexulti. Then if I do seem to be tolerating it I assume when I see her next week we will start going down on Abilify and increase the rexulti past 2mg if needed. If next week she doesn’t mention going down on Abilify, I will ask about it. 

Edited September 28, 2019 by Wonderful.Cheese