[Simakitten]

Hi there,

I was just wondering if anyone's noticed a difference between the regular Seroquel and the extended release one. I've been on the XR for about 2-1/2 years but feel that the regular Seroquel used to work better somehow, though I could be wrong.

Has anyone else tried both and noticed any difference?

I was drowsy the next day on the XR but on the regular i'm fine. I'm doing well on the Seroquel. I skipped my intense depression this Winter and am hopeful i will skip my intense mania this Spring. It's off to a good start. The weight gain is a bore but better fat and alive than skinny and dead!

[BeyondtheRainbow]

I had an enormous difference between the two. When XR was coming out I read about it and that it was designed for people who needed to be on higher doses but were too sedated. I begged to be allowed to try it immediately and was on it so soon it was hard to find. (This was 2008 I think).

I was able to cut my dose in half and was less sedated. It also just worked better for me and I was then able to wean off Depakote over many months (I was on a ton of it). I lost a great deal of weight (70 lbs I think) and felt much better.

It just didn't last. My antidepressant at the time needed very tight dosing and stopped being effective, leaving me needing an MAOI. When I went on that I had to double my Seroquel XR b/c the MAOI is activating. I still kept the weight off and felt great (even had a regular sleep cycle for the only time in my life although it was odd-11 pm-4 AM daily and that was all the sleep I needed for several years). Eventually my bipolar got a lot worse and my medication needs increased and now I'm on 1200 mg of XR. I don't think there is much difference at this high dose although I don't know for sure. But I gained the weight back and when I'm not manic am pretty sedated (other drugs contribute to this and I need to be somewhat sedated to be ok). However, overall XR was a very positive addition and I'm pretty sure regular release would have just totally stopped working even with the dose being very high.

I still wish I were on less; the days when I was on 600 mg and the MAOI were wonderful.

[Crazy Hitch]

Yeah pretty much what other posters have said.

Quetiapine is Seroquel that is released pretty much faster into your system. This is usually taken at night (circumstances pending). It can aid sleep. As it can result in a much more rapid state of relaxation.

Seroquel XR is the extended release one. So it would take 24 hours to release in your system; again taken once a day. May be taken in a.m.

[Simakitten]

Thanks, you guys, for your feedback -- I'm afraid I haven't been around for a bit. I was on the XR for two years after being on the regular for twelve years... and I noticed that the XR worked for some symptoms but not others. So now I'm back on the regular S, today's the third day, and I've been feeling a lot better... I take 400mg at bedtime and it improves my sleep quality, then 200mg in the a.m. and 200mg late afternoon. The difference is subtle but noticeable -- I feel happier, less anxious and lighter inside.

I guess everyone reacts differently to different drugs... even different versions of the same drug. Fortunately, I have been able to control my weight on Seroquel after experiencing weight gain, though admittedly I put a lot of effort into exercising a lot and following a healthy diet.

I just hope the improvement I'm noticing on the regular S will remain... it's too soon to say, but I have my fingers crossed. :-)

[Simakitten]

To JustMeJen5294, it seems to me that 1200mg of the XR is really quite high a dosage. I didn't even know that it could be prescribed that high -- my pdoc tells me that the 800mg I've been on is the max. It'd be nice to know that I'd have room to go up on the dosage if that ever were a necessity. But it sounds like you're not sure if it makes a difference to go up that high...? You don't feel any different from that? Don't mean to pry ... just curious is all. :-)

[BeyondtheRainbow]

It is an incredibly high dose. 800 is the max FDA approved. Going that high was necessary because I am not able to take any other atypicals and am essentially out of medication options until something new comes out (or I have to go on an older med and I'm at higher risk for movement disorders because I've had them from meds less likely to cause them, several times).

The 1200 does work for me. What I meant was that at that does I'm not sure how much different XR is from regular release in terms of side effects. I still am sedated, I still have weight gain that doesn't come off no matter what I do. In fact 1200 has been extremely efffective and I made it a year without a major episode (if you don't count struggling greatly with something anyone would struggle greatly with) which is beyond amazing for me since I usually have had a major episode about 1-2 months after the end of the prior one for many years. I've never gone that long without a big episode.

1200 is about as high as I'm allowed to go. A very painful event is pending on an unknown timeline for me and when I was concerned that having my dose maxed out meant nothing to increase when that happens my psychiatrist said I could go up 100-200 mg for a month or two when that happens but only for a short time. So pretty much if I happen to be stable we can do that and if I'm still not stable from this episode then I'll be looking at another medication. And since I'm already on a bunch nobody wants that.

I know my psychiatrist has a few other people on really high doses. She feels like it is a safe, clean drug and that it is ok to use it this high with careful monitoring (I'm seen monthly and have email to contact her between if needed). It's funny, I get it from patient assistance and they have fought hard about sending it to me, I think because it is so much. Hopefully we have finally convinced them it's ok but they've ignored numerous requests from my psychiatrist to send it to me and we think it is because it is so much since none of her other patients have that happen with patient assistance.
So it works but it does get some requests for clarification from my family dr (who is used to me being on huge doses of stuff but when he was a newly practicing dr my doses used to stun him "I've never seen anyone AWAKE on this much Depakote and wait you're taking HOW MUCH Seroquel?" (not on Depakote and fighting to stay off it. Hate that drug).). I break one tablet so it is immediate release which we hoped would help me fall asleep. I don't remember if that worked initially, it must have or I wouldn't have kept doing it, but it doesn't now.

But yes, it's very safe to go up higher. When I was suicidal the amount I had access to was seriously restricted (actually it was restricted for nearly 3 years until they were SURE I was safe) and once when I accidentally took my PM meds at 9 AM and my own psychiatrist was not working that day I was questioned very heavily by the person covering for her to be sure I had't taken 2400 mg in 12 hours on purpose. And then I slept for about 2 days straight.

Originally Posted by Simakitten

To JustMeJen5294, it seems to me that 1200mg of the XR is really quite high a dosage. I didn't even know that it could be prescribed that high -- my pdoc tells me that the 800mg I've been on is the max. It'd be nice to know that I'd have room to go up on the dosage if that ever were a necessity. But it sounds like you're not sure if it makes a difference to go up that high...? You don't feel any different from that? Don't mean to pry ... just curious is all. :-)

[Simakitten]

JustMeJen5294,
Thanks for sharing the info regarding your Seroquel dosage. It must be difficult having to convince others that you're handling the 1200mg dosage so well. I wish my pdoc would consider doing the same -- I feel as though I've built up a tolerance to it over the years. I remember years ago how the side effects -- immediate need to sleep, etc. -- would hit me hard, but now I can take the Seroquel in the daytime and not have a problem going about my business... even on 800mg it seems weaker than before. What I'd really like is for her to add a small dosage of another AP med... but she is absolutely refusing to do that. (Oh, I was on Depakote for a few years and was happy to get off of it... and when I did, I noticed no difference whatsoever, which implies that I'd been taking the stuff for nothing!).
Btw, sorry for not following up for a while... I don't get online here very often.
Thanks for your reply,
Simakitten

[BeyondtheRainbow]

Simakitten, apparently it can be higher. I'm on 1600 mg emergently starting tonight for a short term boost to hopefully stop my mania. I'm a bit afraid of this dose I must admit. But it's just for a while.

Originally Posted by Simakitten

JustMeJen5294,
Thanks for sharing the info regarding your Seroquel dosage. It must be difficult having to convince others that you're handling the 1200mg dosage so well. I wish my pdoc would consider doing the same -- I feel as though I've built up a tolerance to it over the years. I remember years ago how the side effects -- immediate need to sleep, etc. -- would hit me hard, but now I can take the Seroquel in the daytime and not have a problem going about my business... even on 800mg it seems weaker than before. What I'd really like is for her to add a small dosage of another AP med... but she is absolutely refusing to do that. (Oh, I was on Depakote for a few years and was happy to get off of it... and when I did, I noticed no difference whatsoever, which implies that I'd been taking the stuff for nothing!).
Btw, sorry for not following up for a while... I don't get online here very often.
Thanks for your reply,
Simakitten

[Simakitten]

JustMeJen5294,
Wow... 1600mg! I hope it helps with controlling your mania (I'm also sorry you're experiencing that right now). I know my pdoc would never approve even the 1200mg dose, though maybe I can convince her to go a bit above 800mg eventually (though I kind of doubt it, as she's a stickler for protocol). Good luck with the temporary increase and I hope it helps to stabilize your mood!

[BeyondtheRainbow]

I was slightly wrong--I'm on 1500 mg (which is pretty much just as ridiculously high). And my psychiatrist told me today that she's had people on more than that and so I don't have to worry that I need to come down right away.

I should say that my psychiatrist has a few special qualifications. One is that she is a pharmacists as well as a psychiatrist. So she understands medications in a different way. She also mostly treats difficult to treat patients. And she works for Cleveland Clinic so she has the resources and people's ongoing research to back up many things that are probably unusual (but which I no longer think about being that at all which weird to see through others' eyes). A few years ago I wasn't getting a lot better and she just set up appointments with 2 of the top drs in the world. I never actually went to them b/c I wound up in the hospital instead (I saw one in the hospital one day but not for the consult that had been planned). There is a dr in Cleveland who is one of the top if not THE top expert on bipolar in the US/world. I was able to do a clinical trial with him when I was first diagnosed and she's consulted with him a few times on med ideas for me when options were slim as well.

So she's in a position where she feels safe doing this kind of radical thing. She's always said that I was on as much as she wanted to give me but apparently (I'll have to ask this) that meant "unless an emergency comes up". I know it really helps that she knows so much about drugs and how they work and also that she has the support of a huge and excellent institution. It makes her perfect for me; a dr who wasn't willing to be creative would have run out of options for me a long time ago. If the circumstances weren't as they are I am not sure I'd feel as safe with something this extreme.

I do not want to stay on this much Seroquel for too long because I don't want to gain the weight and it is hard on my stomach and digestion. So I am going to talk to her at my next visit about gradually transitioning to being partly on Latuda and partly on Seroquel and maybe having a little less drastic dose but also having more wiggle room with both. I don't really want to be on 2 APs but I'd rather be on a lower dose of that and be able to increase it than to be reliant on Seroquel when this much of it is necessary to just barely be ok. Plus a lot of meds is a lot of meds whether it is one med that is really high or two that are more moderate. I don't know what she'll say but I'm concerned for good reasons. I am likely to get manic in June, I nearly always do. And there is a very, very painful event that is going to happen in my family anytime now that will be very hard to get through and which already tore my family in 2. So I need to have the ability to adjust meds when those things happen.

There was a long time I was on 600 mg but I had 50 mg tablets available and was allowed to adjust my dose up to 900 mg as I needed. That was nice because I could go to 900 for a week or two and then back down again and do well. I was still constantly cycling and mixed but in that period of time I was functioning really well and responding to meds better; everything was at a lower level than ever before. It was nice.

Now of course I can't just mess with the dose at will. But when I had that freedom it felt so good because it was like I was really in control to some extent.

If you ever feel like you want more freedom I think a lot of teaching hospital drs are more open, at least from what I have encountered with my dr and with both those in the clinical trial years ago and when I've been in the hospital and seen either the hospital dr or someone covering for him. Nobody has ever shown much surprise at what I take (except for the amount of stool softeners and senna I was taking the first time I was in the hospital; it WAS a lot). The hospital dr likes to get people off benzos but has kept me on mine except when I was suicidal and the

*trigger*

Possible trigger:

plan was to take an overdose of benzos

so I was off them for a few weeks. But mostly he's left them alone mostly because I've been on them for many years and I imagine because she's told him I do need them. I have no idea if he'd agree to my current 2 benzo mix but I like to think if I wind up there he'll agree that it's an extreme situation and that I don't take both very often except for right now and similar times.