Thanks so much, Donna!  You have no idea what a help your post has been to me, giving hope in our situation.

Further questions, if I could:

1)  Do you have any issues with diabetes or the like?  We took our son off Zyprexa six months ago because he was eating everything that moved or didn't move, and also his bloodwork pointed to some diabetes markers;  he wasn't there yet, and we didn't want to move in that direction, so we put him on Abilify, then Saphris, then Geodon, and he struck out on all three.  This was a very difficult time, and he was exhausted mentally and emotionally, so we went back to what had worked before:  Zyprexa.  

I guess the weight gain is acceptable as long as diabetes is not an issue.  Unfortunately, he is very sensitive to weight issues and does not want to be on Zyprexa because it may cause him to gain weight.  It is also a bit a part of a delusional system he had (lots about his body), though this is less than it was when he was in a psychosis.  But I agree: in the long run, sanity is definitely preferable.

2)  Oddly, everyone says that our son is doing great, but he himself says that the Zyprexa isn't working.  It turns out for some reason it is working on the negative symptoms, so his personality is coming back, along with his sense of humor, but not his positive symptoms, such as hearing voices, backwards thoughts and the like.  When he was on Zyprexa eight months ago, it was the opposite:  it first gave him relief from symptoms, but the negative symptoms took a lot longer to be healed.

Have you ever heard of this?  We are trying to keep him taking his medication, which in general he has been good to do, but in his mind it's the same old accusing voices all the time etc.  Any thoughts?

3)  In response to the above, our psychiatrist increased the dosage from 10 mg to 15 mg /day, hoping the positive symptoms are addressed by the Zyprexa.  What dose are you on?  Were you able to reduce the doseage as you went on?

Thanks much -- very much -- in advance.

Moonlight

I have my blood sugar checked every 6 months and so far it hovers around 98, which is fine.  But I have high blood pressure (it was very high but is now controlled by meds) and hypothyroidism and gastric reflux.  It wouldn't surprise me to find that all of this is related to the use of Zyprexa, but I don't know for sure.  I just didn't have any of them before I took it.  I had always been tiny and weighed 93 lbs when I started Zyprexa.  Before long I weighed 186 (doubling my weight) because I was eating 24x7.  Ravenous hunger.  Unbelievable hunger.  I wish the doctors who prescribe it could take it themselves for 6 months and find out what it is really like.  I think Zyprexa is bad for my physical health, but I would be in a state mental hospital on long-term care w/o it.  In fact, my first two doctors suggested that I do so.  Diabetes runs in my family and I really do think I will develop it at some point.

I have taken Lithium, Tegretol, Depakote, Trilafon (paralyzed my face muscles the first time I took it,) Haldol, Risperdal (on which I vomited constantly,) Seroquel, Geodon, and Abilify, some of them more than one trial, but none worked for long.  It was always back to Zyprexa.  For a couple of years, I was on 40mg (yes, 40!) because I just happen to be one of those people who needs a big dose.  Now I am on 15mg.  I might add that I hate the side effects.  I went from a size 3 to a size 16.  But whenever I stop taking it or cut the dose way down, the schizophrenia symptoms start coming back in as short a time as two days.  There is a new med called "Invega" but it is a metabolite of Risperdal and would give me the same side effect of nausea.  I only took Clozaril for 2 weeks because I was so sick I couldn't safely drive to the lab for a blood draw, so I opted out of that one.  And, as you said, it causes weight gain, too.  I dropped 20 lbs in about a month on Geodon but I couldn't sleep -- it made me feel very agitated all the time.

I know first-hand, too, what your son is saying about the symptoms.  Other people look at me and say, "Hey -- you look great to me.  I can't understand why you can't work and why you tend to isolate yourself."  I can't work because I have a difficult time keeping information in my head and learning new things on a job.  And I isolate because socializing makes me so uneasy and yes, unhappy.  I have to avoid stress or risk a relapse.  Stress brings on the voices and thought distortion.  I also lack emotion.  I still have the negative symptoms, in other words.

I didn't get magically better when I first started the Zyprexa -- it took several months for me to start feeling a difference in any of my symptoms.  But gradually, it changed my world from literal gray to one of color.  I am substantially recovered now, although I don't think I will ever be "cured."

All in all, the Zyprexa is a miracle drug for me.  I can either take it or have a relapse and end up int he hospital again.  Good luck.

Donna:

Thanks again for your post; again, it was very helpful!

Question:  do you still have intense cravings to eat or has that somewhat calmed down for you with time?  I know what that is like (and, yes, if you haven’t seen it, I don’t think you can appreciate it):  my son, who has always watched what he ate, worked out often etc. was suddenly eating everything.   He would even pour honey onto a spoon and eat it.  If you know anything about my son, that is just not like him.

I know what you mean about the Zyprexa taking time to work.  Before, when he was on it, it took four months to get him pretty much back to normal, and it seemed to work on the positive symptoms first, then the negative.  Thus, he got relief from his symptoms, though we didn’t see much.  The problem is now that we don’t have much time, but then again, there’s not much we can do:  it works as it works.  At different times he has said things like, “Just shoot me.  It would be better.”  And “I wish I was dead.”  And: “The voices are driving me crazy.”  I wish it would kick in on the positive symptoms so he could get some relief.

It is interesting with people.   They judge so much by the outward and don’t know what is really going on.  He tells me everything, which is good, so I know what it’s like for someone with this.  It is hell.  So I can appreciate your situation.

I’m really glad that you have found help with Zyprexa though, obviously, it is not the perfect solution.  I think we are going to end up in the same boat.  Along the way I think there’s going to be lots of rapids; my son already says, “Psychosis has ruined my life,” and “I want to get off the medicine because it’s making me fat,” so having to be on Zyprexa long-term will be a blow.  And he is so young. 

Thanks again—

Moonlight

The only way the cravings go away is if I knock the dose down to 4 - 8 mg.  If I go over then the hunger kicks in and I instantly start gaining weight again.  But for me, just the past couple of months I can tell my days of "adjusting" the dose are gone.  It is bad for me to do that.  Did you know that each time you stop taking a med that works, there's a chance it won't work if you go back on it.  Sometimes when I go up to 12 - 15mg I will gain as much as 10 lbs in a week, so I know some of it is fluid retention.  Zyprexa makes me thirsty, too.  Sometimes I think, well, I'm 52 and what's the use in trying to have a good figure anymore.  But then there is the fear of diabetes.  I have managed to get down to 165 but about 3 days ago I started taking the full 15 mg and this morning I weighed 171.  You have to choose the lesser of two evils.  Damned if you do, damned if you don't.  At some point, the meds will be entirely up to your son and I hope he continues to take them.

Donna:

Well, if nothing else, you can be happy that you are helping someone in the same situation as you! This information is invaluable -- I could have spent three months on the internet reading articles trying to put all this together.

It is very good to know that returning to a medication means that it might not work in the future.  This is the third time we are coming back to Zyprexa, so it's old faithful and hopefully it will work.

If you don't mind me asking, do your symptoms come back on 4 - 8 mg?  Is there any problem with going down on the dosage and then up on it again, as opposed to getting off the medication, in terms of it working again?  Is that why the days of "adjusting the dose" are over?

I feel for you.  If you can't adjust the dose will you perhaps have to live with food cravings but try not to eat?  That doesn't sound fun!  How long have you been on Zyprexa?

Just by chance, do you live in NY?  I only ask because, when my son is 18, he will be able to do whatever he wants to do regarding medication.  I know it's more difficult to admit an adult to the hospital than an adolescent, at least involuntarily, but I was wondering about NY in particular.  I'm getting ahead of myself, though.  

It's amazing how quickly your life can change.  I had esophageal cancer three years ago, and it is the second worse in the US.  I had just gotten my masters degree, a new job and everything was going great.  Then I was diagnosed with cancer and, in a day, my life changed.  I feel the same way again with my son's diagnosis.  Life will forever be different, but not necessarily bad.

Thanks much again!

Moonlight

Yes, I am very  happy to be of help.  That's why I come here, hoping to help someone.  On 4-8mg, per your question, I can go w/o symptoms for 4-6 weeks.  Then my thoughts to haywire -- they fragment and when I close my eyes to sleep there are all these designs and shapes in neon green and bright white.  Kind of freaky.  It progresses from there to hearing music 24x7, and it is not pleasant after a while.  Like an obsessive thought, almost.  The music is usually why I raise the dose.  The voices don't start unless I go completely off the meds, and probably start within a week or two  (I don't let it get that far.)  But oddly enough, I find the days I "go without" the first day or two I feel totally fantastic.  Kind of manic.  And I get loads of stuff done that I usually procrastinate over.  And I feel extremely happy for a change.  I feel like talking to people and being generous and generally gregarious.  So you can see why it is tempting for me to do that once in a while, when I really want a good day.  Most of my days are just kind of dull, neither good nor bad.  Just in between.  I spend a lot of time watching DVD's and TV -- usually 8+ hrs a day.  I have just finished 3 months w/o TV, though, because I felt it was wrong to sit there all day watching mostly reruns.  But then I just replaced it with Netflix "instant watch" on my computer!

Regarding food cravings, I think anyone who hasn't been in this [Zyprexa] situation simply has no idea what it is like.  My psychiatrist gave me a video to watch which simply said "eat less and exercise more."  Well, I already knew that much.  But it doesn't work.  Because, although exercise is possible and even good, it does not off-set the appetite in any way.  It seems rational thought goes out the window.  Like a real compulsion to eat, with no inhibitions.  I used to watch every bite and run 5 miles a day and always kept in top shape.  But after weight gain on Zyprexa that was impossible.  I did buy a treadmill a few months ago and use it religiously 4-5 times per week.  But trying to go on any "diet" to lose or even just stay the same simply is not an option.  I can manage to go most of the day eating normally, but at night I am an eating machine.  I'm sure your son is experiencing this.  No, it isn't fun.  But on the other hand, neither is active schizophrenia.  So I keep juggling the dose.  And my doctor is aware of what I do.  He expects me to take bigger doses when I need them, which is not unusual when on antipsychotics.

I am not offering you medical advice or even saying what is right for your son to do.  He should not do anything regarding which medication or which dose without the full cooperation of his psychiatrist.  I'm just telling you that after 15 years post-diagnosis I have found what works for me, even though it is still far from ideal.

For your son I do hate that for him I take zyprexa 5 miligrams I hope you can find a different solution the weight gain try alli and the other stuff try omega 3 fish oil-helps fight gray matter depletion. and vitamin e-that helps stop the jerking movements before they start. I think inositol is good and L-tyrosine  they seem to help me and glycine and niacin I hear is good to I also take b-vitamin shots vitamin b-12 that helps nervous system function and energy:)

Thanks, Donna.  We will try some of the above, as he is really into natural stuff.  Another question: was it difficult for you to accept your schizophrenia diagnosis, as well as having a fairly medication-resistant form of it?  

I ask because I think my son will have a very hard time with this.  He is still very symptomatic, and really doesn't like it.  The fact that in some ways this may be chronic -- though hopefully relieved by the medication once it fully kicks in -- will be a blow.  He wants to get off Zyprexa because it causes weight gain (and he thinks it is not working), and that he stays trim is very important to him.  

We have not broken this to him for many reasons.  Perhaps when the medicine kicks in and things are "looking up" the psychiatrist and I will break it to him.

Thanks in advance!

Moonlight

I go by sunfire on here, maybe you could try him on alli, zyprexa has alot of extreme side effects after the meds kicks in he may be able to lower the meds, I am only soopposed to be taking 5mg I take b-12 injections for energy this helps some @ least to feel like getting off the couch and try a sleep study he possibly could be having hypnagogia I do! Sometimes other conditions can be misdiagnosed as schiz. But anyway if not try him on the vitamins I spoke about in the above article! like glycine, b-12, L-tyrosine, inositol and the other ones Please tell him that zyprexa can be given for other things besides schiz he could call it nerve pills thats what my bottle says is for nerves some are prescribed it for BiPolar and if all else fails the most dangerous one is Clozaril but extremly affective! It causes weight gain tooo their is only a  slight difference between clozaril and zyprexa the benifits and the possibly the white blood count being screwed with clozaril would make him like he always was but it can be the most dangerous i used to use it.. Hope this helps. God Bless You and him:) I have hope that there will be more meds that are more helpful and less dangerous out someday!

Did you know that in the 1950 antipsycotics(neuroleptics) was accidently found to alleviate the symptoms they was prescribed as an antihistamine and it helped people, so try him on benadryl if you must I use it moderately. Goood Luck and GoD Bless You

Donna (and others),  the doctor just took my son off Zyprexa and will titrate him over to Seroquil.  Amazingly, the Zyprexa did not work;  it had worked twice before but didn't the third time.  This is not good, as now we have struck out on a total of five (5) medications:  Abilify, Saphris, Geodon, Risperdal and now Zyprexa.  So, just because a medication worked before, doesn't mean it will continue working -- just as you wrote.

Any thoughts on all this?  Thanks for your help!

Moonlight