Wonderful.Cheese Posted October 3, 2019 Share Posted October 3, 2019 How long does it take for rexulti to start working? Even just a little improvement? I don’t want to jinx anything. Is it too soon to notice anything or am I just getting placebo effects and I’m just having a good day? And because this is my birthday and wedding anniversary month so I’m feeling excited? For reference, I started 2 mg, two nights ago. I had 4 days of 1 mg. Then this recent increase to 2 mg. This is day 7 on it. Or will be. Link to comment Share on other sites More sharing options...
mikl_pls Posted October 3, 2019 Share Posted October 3, 2019 @Wonderful.Cheese, it typically doesn't take long for Rexulti to start working (for good or for bad). It can actually start working very quickly for some, in fact. I would estimate that it would take 2-3 days to start really working for depression/negative symptoms, and probably 1-2 weeks for positive symptoms. Not sure about mania though. That's just a guess based on other antipsychotics though, but it seems to work quicker than most antipsychotics based on anecdotal reports from other people taking it. It is like Abilify only insofar as its half-life is about 91 hours according to Epocrates. So it would take about 455 hours to reach steady state, or almost 19 days. For me, it didn't take but a few days for it to start affecting me negatively... lol. Same for my mom and my best friend, @THE_REAL_Bryan. (I sure wish he'd get his butt on here some time... lol. He has a lot of good things he could share with this community.) @browri knows quite a lot about Rexulti, but I haven't really seen him around here for a little while. I believe he's got a lot going on right now though. 1 Link to comment Share on other sites More sharing options...
Iceberg Posted October 3, 2019 Share Posted October 3, 2019 10 hours ago, Wonderful.Cheese said: How long does it take for rexulti to start working? Even just a little improvement? I don’t want to jinx anything. Is it too soon to notice anything or am I just getting placebo effects and I’m just having a good day? And because this is my birthday and wedding anniversary month so I’m feeling excited? For reference, I started 2 mg, two nights ago. I had 4 days of 1 mg. Then this recent increase to 2 mg. This is day 7 on it. Or will be. I agree - I don’t think it’s too soon 1 Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 4, 2019 Author Share Posted October 4, 2019 17 hours ago, mikl_pls said: @Wonderful.Cheese, it typically doesn't take long for Rexulti to start working (for good or for bad). It can actually start working very quickly for some, in fact. I would estimate that it would take 2-3 days to start really working for depression/negative symptoms, and probably 1-2 weeks for positive symptoms. Not sure about mania though. That's just a guess based on other antipsychotics though, but it seems to work quicker than most antipsychotics based on anecdotal reports from other people taking it. It is like Abilify only insofar as its half-life is about 91 hours according to Epocrates. So it would take about 455 hours to reach steady state, or almost 19 days. For me, it didn't take but a few days for it to start affecting me negatively... lol. Same for my mom and my best friend, @THE_REAL_Bryan. (I sure wish he'd get his butt on here some time... lol. He has a lot of good things he could share with this community.) @browri knows quite a lot about Rexulti, but I haven't really seen him around here for a little while. I believe he's got a lot going on right now though. Ok so I’m not “crazy” for thinking it’s starting to help a little. Ha. Thanks for that validation! I appreciate your help as always. Now it’s officially 7 doses and I do notice a slight difference I believe. I still have some of those I guess delusional thoughts as my pdoc and you have said. But maybe cautiously hopeful? 12 hours ago, Iceberg said: I agree - I don’t think it’s too soon Thanks iceberg! I appreciate your help too. I’m glad to hear it’s just not “all in my head.” That’s good news. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 4, 2019 Author Share Posted October 4, 2019 I see my pdoc today. What do you guys think about my thoughts? I want to start decreasing the Abilify and she will probably want to increase the rexulti. But I’d rather save the rexulti increase for a rainy day. I think we should stay at 2 mg and see how I do with lowering Abilify. I’m not saying I for sure won’t need 4 mg rexulti, but I say let’s see what 2 mg really can do. I’ve only been on 2 mg of it for 3 days. I think it’s too soon for an increase. I know my pdoc likes to really max out meds, and fast. Am I making sense to want to just lower Abilify a little and stay on 2 mg rexulti and see how I do? Link to comment Share on other sites More sharing options...
Iceberg Posted October 4, 2019 Share Posted October 4, 2019 15 minutes ago, Wonderful.Cheese said: I see my pdoc today. What do you guys think about my thoughts? I want to start decreasing the Abilify and she will probably want to increase the rexulti. But I’d rather save the rexulti increase for a rainy day. I think we should stay at 2 mg and see how I do with lowering Abilify. I’m not saying I for sure won’t need 4 mg rexulti, but I say let’s see what 2 mg really can do. I’ve only been on 2 mg of it for 3 days. I think it’s too soon for an increase. I know my pdoc likes to really max out meds, and fast. Am I making sense to want to just lower Abilify a little and stay on 2 mg rexulti and see how I do? Makes sense to me, as long as you. Act fast if any manic type things start to pop up. Also, you could split the difference and try 3 mg if you really need the increase Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 5, 2019 Author Share Posted October 5, 2019 My pdoc said yesterday that the goal would be to have me remain on Abilify 30 mg, rexulti 2 - 4 mg, and zyprexa 20 mg for a long long while to make sure I remain stable. Then after that we can start to think about coming off Abilify very very slowly month by month a tiny decrease. I’m a little scared to get off Abilify. I know 3 AAP’s isn’t ideal and bad, but I do best on 3. But I know you aren’t supposed to take Abilify and rexulti together either. So. Link to comment Share on other sites More sharing options...
argh Posted October 5, 2019 Share Posted October 5, 2019 (edited) . Edited September 20, 2020 by argh 1 Link to comment Share on other sites More sharing options...
mikl_pls Posted October 5, 2019 Share Posted October 5, 2019 8 hours ago, Wonderful.Cheese said: My pdoc said yesterday that the goal would be to have me remain on Abilify 30 mg, rexulti 2 - 4 mg, and zyprexa 20 mg for a long long while to make sure I remain stable. Then after that we can start to think about coming off Abilify very very slowly month by month a tiny decrease. I’m a little scared to get off Abilify. I know 3 AAP’s isn’t ideal and bad, but I do best on 3. But I know you aren’t supposed to take Abilify and rexulti together either. So. It took me several months to get off Abilify without losing it myself, so I think that's a good idea. Any time I tried to decrease the Abilify too quickly or come off of it cold turkey (like Stahl says you can), I went completely psychotic. Glad things are looking up for you! 1 Link to comment Share on other sites More sharing options...
Iceberg Posted October 6, 2019 Share Posted October 6, 2019 14 hours ago, Wonderful.Cheese said: My pdoc said yesterday that the goal would be to have me remain on Abilify 30 mg, rexulti 2 - 4 mg, and zyprexa 20 mg for a long long while to make sure I remain stable. Then after that we can start to think about coming off Abilify very very slowly month by month a tiny decrease. I’m a little scared to get off Abilify. I know 3 AAP’s isn’t ideal and bad, but I do best on 3. But I know you aren’t supposed to take Abilify and rexulti together either. So. It sucks but Unfortunately most of us who are treatment resistant don’t get to always do “ideal” to make things work 1 Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 6, 2019 Author Share Posted October 6, 2019 16 hours ago, argh said: Hey whatever works. Glad things are on the up Thanks argh. I appreciate it. I’m trying to keep this momentum going. It’s not all smooth sailing but I’m trying. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 6, 2019 Author Share Posted October 6, 2019 16 hours ago, mikl_pls said: It took me several months to get off Abilify without losing it myself, so I think that's a good idea. Any time I tried to decrease the Abilify too quickly or come off of it cold turkey (like Stahl says you can), I went completely psychotic. Glad things are looking up for you! Thanks Mike. I appreciate you sharing your experience. I hope that doesn’t happen to me when we finally taper me off Abilify very slowly. I have been on it so very long I guess we will have to see what happens when that time comes to taper off. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 6, 2019 Author Share Posted October 6, 2019 10 hours ago, Iceberg said: It sucks but Unfortunately most of us who are treatment resistant don’t get to always do “ideal” to make things work Thanks iceberg. You are very correct. “Ideal” isn’t always an option for treatment resistant patients for sure, unfortunately. Whatever works is what has to be done to make things work out for a person. Link to comment Share on other sites More sharing options...
mikl_pls Posted October 6, 2019 Share Posted October 6, 2019 6 hours ago, Wonderful.Cheese said: Thanks Mike. I appreciate you sharing your experience. I hope that doesn’t happen to me when we finally taper me off Abilify very slowly. I have been on it so very long I guess we will have to see what happens when that time comes to taper off. I didn't mean to scare you with my experience. I hope that when you start to taper that you are able to do so and stay stable. 1 Link to comment Share on other sites More sharing options...
mmaryland Posted October 8, 2019 Share Posted October 8, 2019 When I once tried to come off Rexulti I did so too fast and felt into a really bad depressive episode. I remember specifically because it was thanksgiving and I didn’t leave bed or anything. I had switched to Latuda at the time because Rexulti was causing a little bit of mania. But now I am back on Rexulti for a the mood boost. I am supposed to be on Vraylar 3mg but I lost my prescription along with half of my supply of zenzedi so I am taking Rexulti for the time being until I can meet with the pdoc and get a new RX for Vraylar. For me Rexulti works very fast, so I would say that seeing improvements in days isn’t too far of a stretch. 1 Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 9, 2019 Author Share Posted October 9, 2019 I have been struggling again, unfortunately. With low mood and other bad thoughts too. Voices. I see pdoc on the 18th. Do I agree to her suggestion to up the rexulti to 4 mg like she wanted to do last appointment? I don’t want to gain weight. Will 4 mg even make a difference or will I just get more side effects? Link to comment Share on other sites More sharing options...
CeremonyNewOrder Posted October 9, 2019 Share Posted October 9, 2019 1 hour ago, Wonderful.Cheese said: I have been struggling again, unfortunately. With low mood and other bad thoughts too. Voices. I see pdoc on the 18th. Do I agree to her suggestion to up the rexulti to 4 mg like she wanted to do last appointment? I don’t want to gain weight. Will 4 mg even make a difference or will I just get more side effects? It's worth a try. 4mg is the dose for schizo disorders. Link to comment Share on other sites More sharing options...
argh Posted October 9, 2019 Share Posted October 9, 2019 (edited) . Edited September 20, 2020 by argh Link to comment Share on other sites More sharing options...
CeremonyNewOrder Posted October 9, 2019 Share Posted October 9, 2019 I just wanted to add that Rexulti took a little time to work. It wasn't instantaneous like other APs. Link to comment Share on other sites More sharing options...
dancesintherain Posted October 9, 2019 Share Posted October 9, 2019 I second argh and CNO. This crap sucks, so it’s at least a possible option to help. Link to comment Share on other sites More sharing options...
notloki Posted October 9, 2019 Share Posted October 9, 2019 How long a drug takes to works is an individual factor, it varies much from person to person, with metabolism. I think there is no utility in polling the random list of mentally ill for specific things like "how soon will it work". Unless you go to the trouble to set up a placebo group and have double blinding to filter out personal bias of the testers and the tested, the results will not correlate to any real life events. Keep in mind placebo response is not all tied to the drug supposingly being tested. People report all kinds of side effects to placebos (sugar pills), side effects that they are sure are caused by the meds, EXCEPT they were not taking the real drug. So placedo response is real , generally. Something is causing this and it is not related to the process by which an effective drug works. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 I’m starting to believe that rexulti is nothing more than a glorified sleeping pill. I don’t think it’s worth my time and effort to try 4 mg (2 mg is current dose). I see pdoc tomorrow and I’m going to ask to discontinue it. It just increases my appetite and helps me sleep. No help for mood nor anything else. I’m completely hopeless and despondent. I’m out of options. I’ve tried clozapine and all the AAP’s. I tried haldol very briefly but got scared. Maybe this is as good as it gets. Suicidal depression and sometimes manic episodes and then ongoing voices and continuous and disturbing messages from the universe whether mood is up or down or “normal.” The messages and voices never end. It’s awful. I can’t go on like this. The universe will take me soon anyway. I feel it I think. I hope. Link to comment Share on other sites More sharing options...
Iceberg Posted October 18, 2019 Share Posted October 18, 2019 13 minutes ago, Wonderful.Cheese said: I’m starting to believe that rexulti is nothing more than a glorified sleeping pill. I don’t think it’s worth my time and effort to try 4 mg (2 mg is current dose). I see pdoc tomorrow and I’m going to ask to discontinue it. It just increases my appetite and helps me sleep. No help for mood nor anything else. I’m completely hopeless and despondent. I’m out of options. I’ve tried clozapine and all the AAP’s. I tried haldol very briefly but got scared. Maybe this is as good as it gets. Suicidal depression and sometimes manic episodes and then ongoing voices and continuous and disturbing messages from the universe whether mood is up or down or “normal.” The messages and voices never end. It’s awful. I can’t go on like this. The universe will take me soon anyway. I feel it I think. I hope. The only thing is that you might have to try 4 if you want it to hit psychosis 1 Link to comment Share on other sites More sharing options...
argh Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited September 20, 2020 by argh 1 Link to comment Share on other sites More sharing options...
mikl_pls Posted October 18, 2019 Share Posted October 18, 2019 55 minutes ago, Wonderful.Cheese said: I’m starting to believe that rexulti is nothing more than a glorified sleeping pill. I don’t think it’s worth my time and effort to try 4 mg (2 mg is current dose). I see pdoc tomorrow and I’m going to ask to discontinue it. It just increases my appetite and helps me sleep. No help for mood nor anything else. I’m completely hopeless and despondent. I’m out of options. I’ve tried clozapine and all the AAP’s. I tried haldol very briefly but got scared. Maybe this is as good as it gets. Suicidal depression and sometimes manic episodes and then ongoing voices and continuous and disturbing messages from the universe whether mood is up or down or “normal.” The messages and voices never end. It’s awful. I can’t go on like this. The universe will take me soon anyway. I feel it I think. I hope. For what it's worth, when I took it at 3 mg, it became somewhat stimulating, although not as much as Abilify was. I agree with what @argh and @Iceberg said about trying it at 4 mg. 2 mg is the target dose for antidepressant adjunct therapy, while 4 mg is the target dose for schizophrenia and related disorders. I know how hard it is to try not to give in to the hopelessness when all that surrounds you is just that, but please do try to have hope. Try to take solace in the fact that you still have plenty of options with the typicals. I don't blame you for not wanting to take Haldol, but if all the AAP's fail, it might be worth it to give it or another typical a try despite your fears. After all, it might not be that you would have to take a typical antipsychotic forever. You might become stable enough to go off of it and just take whatever AAP(s) you might be taking at the time. Something that might be of interest to you, there is a new AAP in the pipeline called lumateperone. Perhaps your pdoc could hook you up with a clinical trial or something and ensure that you are on the drug rather than placebo. My pdoc does that for her patients who can't afford things like chemotherapy and patients who haven't responded to anything on the market. 1 Link to comment Share on other sites More sharing options...
random_name Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited October 19, 2019 by Lapis.Lazuli Link to comment Share on other sites More sharing options...
mikl_pls Posted October 18, 2019 Share Posted October 18, 2019 45 minutes ago, Lapis.Lazuli said: Are you still taking a stimulant med? You might want to consider coming off of that. I was told by numerous Pdocs that people with psychotic-like symptoms cannot take stimulants. Just a little nuance nit-picky detail, Nuvigil (armodafinil) isn't a stimulant, it's a eugeroic. It doesn't work quite the same way as classical stimulants like amphetamine or methylphenidate. That being said, there is an article on modafinil (its racemic predecessor drug, Provigil) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5353011/) that says that it can induce psychosis. So you do bring up a good point here. @Wonderful.Cheese, you know they came out with a new medicine for hypersomnolence called Wakix (pitolisant). It hasn't hit pharmacies yet I don't think, but the FDA just recently approved it for use in the US. To my knowledge, it is a histamine H3 receptor agonist, which is how it produces its wakefulness-promoting effects. Perhaps that might be something to investigate later on down the road? 1 Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 (edited) 10 hours ago, Iceberg said: The only thing is that you might have to try 4 if you want it to hit psychosis Thanks for your input iceberg. I appreciate it. I don’t know what is best at this point. 10 hours ago, argh said: A full trial should be till max dose. Please try that out before you throw in the towel, Thanks argh as always. I don’t know what to do at this point. It’s so tempting to throw in the towel and try a different approach. Edited October 18, 2019 by Wonderful.Cheese Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 9 hours ago, mikl_pls said: For what it's worth, when I took it at 3 mg, it became somewhat stimulating, although not as much as Abilify was. I agree with what @argh and @Iceberg said about trying it at 4 mg. 2 mg is the target dose for antidepressant adjunct therapy, while 4 mg is the target dose for schizophrenia and related disorders. I know how hard it is to try not to give in to the hopelessness when all that surrounds you is just that, but please do try to have hope. Try to take solace in the fact that you still have plenty of options with the typicals. I don't blame you for not wanting to take Haldol, but if all the AAP's fail, it might be worth it to give it or another typical a try despite your fears. After all, it might not be that you would have to take a typical antipsychotic forever. You might become stable enough to go off of it and just take whatever AAP(s) you might be taking at the time. Something that might be of interest to you, there is a new AAP in the pipeline called lumateperone. Perhaps your pdoc could hook you up with a clinical trial or something and ensure that you are on the drug rather than placebo. My pdoc does that for her patients who can't afford things like chemotherapy and patients who haven't responded to anything on the market. Thanks mikl. I appreciate it as always. A typical AP PRN is sounding better and better of an option now. Would loxapine be a good PRN fit? Or is haldol better? Or is stelazine better? For fast acting and knocking out episodes short term? I know you had trouble finding the stelazine in pharmacies though, unfortunately. I don’t want to remain on three AAP’s indefinitely (rexulti, Abilify, and Zyprexa Zydis) until my pdoc deems me stable enough for long enough to get off of Abilify. She may never let me get off Abilify, in fact. She also offered extra 10 mg tablet of Zyprexa Zydis PRN before I brought up rexulti. Any opinions on that option? I know it’s higher than the recommended max dose of Zyprexa. At this point I’d prefer to remain on Abilify and Zyprexa Zydis as my main AAP’s and have something as a PRN AP or AAP to take for episodes. I don’t want to go back to 3 AAP’s and I don’t want to remain on rexulti/Abilify/Zyprexa forever because I’m afraid my pdoc just may do that to me. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 Just a note for @Lapis.Lazuli I take nuvigil for actual diagnosed *sleep disorders*. I don’t merely take it for sedation from medications. In fact, my meds are all mostly taken at bedtime so there isn’t daytime sedation from meds really at all. And FWIW, I’ve been very “psychotic” before taking nuvigil and I’ve been very “psychotic” after taking nuvigil. Also, my pdoc is fine with me taking nuvigil. So that’s what matters most. Not what other pdocs have supposedly told you. My pdoc consulted with my sleep specialist dr. They work together. (And I know who you are IRL. Not sure why you are following/stalking me online. I had to block you here for my safety and sanity. I hope you find some peace soon.) 1 Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 (edited) Well. My pdoc appointment just got cancelled yet again. I need to call back to reschedule. Peachy. I called back and even the receptionist was bummed for me. I got in at a time next week that doesn't really work for me but whatever. Edited October 18, 2019 by Wonderful.Cheese Link to comment Share on other sites More sharing options...
Gearhead Posted October 18, 2019 Share Posted October 18, 2019 That’s outrageous. I’m sorry, Chee. Link to comment Share on other sites More sharing options...
argh Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited September 20, 2020 by argh Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 (edited) 22 minutes ago, argh said: Can you at least call in to get the 4mg approval? I was told pdoc is out of the office today. And any med box changes require minimum 24 hours to be changed or fixed to a new dose or med adjustment anyway. And since it’s Friday that would be a no go for any med adjustments getting to me before the weekend. I’m stuck. Edited October 18, 2019 by Wonderful.Cheese Link to comment Share on other sites More sharing options...
argh Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited September 20, 2020 by argh Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 18, 2019 Author Share Posted October 18, 2019 2 hours ago, argh said: Forgiveness vs permission? Are you still on weekly exact dose med pickup? Or do you have some extra/buffer to go to 4mg... Not that I'm saying you should of course 🤔 I am on weekly exact dose med pickup. If I go up to 4 mg I will run out of rexulti before Wednesday and they will find out what I did. I would risk daily meds again. I'd have to drive there every day this time because I'm no longer on the crisis team. Link to comment Share on other sites More sharing options...
argh Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited September 20, 2020 by argh Link to comment Share on other sites More sharing options...
random_name Posted October 18, 2019 Share Posted October 18, 2019 (edited) . Edited October 19, 2019 by Lapis.Lazuli Link to comment Share on other sites More sharing options...
argh Posted October 19, 2019 Share Posted October 19, 2019 (edited) . Edited September 20, 2020 by argh Link to comment Share on other sites More sharing options...
jarn Posted October 19, 2019 Share Posted October 19, 2019 I'm on 7.5mg Haldol now and it's working well - first day back at work today. Once I got onto therapeutic dosages it worked a lot better (duh). Bit of nausea but that's the only side effect. I used loxapine as my daily plus increases as a PRN and it worked well for everything except mood, so Cheese, that might help too. But my Haldol psychosis seems to be gone, hoping that continues. Link to comment Share on other sites More sharing options...
Iceberg Posted October 19, 2019 Share Posted October 19, 2019 @Wonderful.Cheese Thorazine? Probably not for fast psychosis but very fast if you just need a “chill out” pill that won’t last all day if you don’t want it to. Issue for me was sometimes it was “too chill out” and I got a bit of daytime zombie. Also, have you ever tried trilafon? Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 19, 2019 Author Share Posted October 19, 2019 9 hours ago, argh said: Haldol is supposed to be fast. Jarn recently got on it. The dose for her has been tricky however. She’s also had loxapine so shed be better equipped to advise if its fast or not. Thanks argh. 8 hours ago, jarn said: I'm on 7.5mg Haldol now and it's working well - first day back at work today. Once I got onto therapeutic dosages it worked a lot better (duh). Bit of nausea but that's the only side effect. I used loxapine as my daily plus increases as a PRN and it worked well for everything except mood, so Cheese, that might help too. But my Haldol psychosis seems to be gone, hoping that continues. Thanks jarn. I hope haldol continues to work out for you too. Link to comment Share on other sites More sharing options...
Wonderful.Cheese Posted October 19, 2019 Author Share Posted October 19, 2019 5 hours ago, Iceberg said: @Wonderful.Cheese Thorazine? Probably not for fast psychosis but very fast if you just need a “chill out” pill that won’t last all day if you don’t want it to. Issue for me was sometimes it was “too chill out” and I got a bit of daytime zombie. Also, have you ever tried trilafon? Thanks iceberg. I have never tried Thorazine nor trilafon. I’d be interested in trying either. I Guess I have a lot to talk to my pdoc about. Link to comment Share on other sites More sharing options...
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