Zyprexa's out, now onto the sixth medication!

By moonlight Friday, October 15, 2010

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We met with my son's psychiatrist today and he agreed to take my son off Zyprexa, since we were going to do that anyway down the road; we also increased the Seroquil; he's on a low dose (200 mg) and this will be upped to 300 mg and eventually we'll get to 600 mg/day.

My son really wanted off Zyprexa; it had almost become an obsession with him, he hated being on a weight-gaining medication, and I think this thinking was part of his psychotic thoughts. He said that if we wanted him to continue taking the meds, the Zyprexa had to go, so the doctor listened to him and discontinued it. Well, it turned out this time around -- and he's been on Zyprexa two other times and it worked (albeit with bad side effects) -- this time around, for some weird reason, the Zyprexa didn't work, so it's not a great loss. He got no relief from it. We went nowhere with it. This isn't good, as now we have nothing to fall-back on now.

The list of "dead meds" is long: Risperdal, Abilify, Saphris, Geodon and now Zyprexa; if Seroquil doesn't work, we'll have a perfect half-dozen: six. It's probably not a record, but more than enough for us. And oh, my son is only 16 years old, so it's a lot for him.

All this comes with a bit of suicidal ideation, as he just wants his life back and is incredibly frustrated. The doctor said now he is "tortured in his mind," which is an accurate description. The question is, when to pull the "trigger" and hospitalize him -- something he would definitely not like, having spent three months in a psychiatric hospital in the summer of 2009.

And next, if this doesn't work: Clozeral. Not sure what we would do, as he hates weight-gaining medication, and I'm sure he's going to like the other side-effects. Who would? At this point he'd like to get off all medications, as he thinks then he would be ok, but the psychiatrist said he probably would go back into a deep psychosis. And hey, it's not like the meds have worked that well for him?

So we're stuck. Seroquil is our last shot; we're at the end of the road. If it doesn't work, I'm not sure what we will do. Well, we will do it, but the amount of pain and difficulty could be tremendous. Any thoughts?

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Comments (12) | Add comment

Janet

10/16/10 1:24pm

I can definitely understand your frustration with your son's being unable to find a medication that works for him and one that does not have side-effects associated with it. I was 23 when I was first diagnosed and I am now 50. I too like your son placed on a wide array of medications until finally being put on Seoroquel. At first I was placed on both a morning dose and at dose at bedtime. The morning dose did not work for me because it made me feel extremely tired. I was then placed on a dose to be taken at bedtime. I believe the highest dose of Seroquel I was on was 600 milligrams. I now take 400 milligrams and that has left me the most stable i have been in years.

There is something else you might consider and that is ECT treatments. Some people are against such treatments but for me the treatments did Wonders. Also I feel it is Very Important to Trust one's doctor and also a person must be honest and up front with their doctor. I know with my psychiatrist he wants a person to follow his orders otherwise he feels you are wasting his time as well as yours.

Let me close by saying I will pray for your son and your entire famil that you will find a medication that works well for your son and one with little side-effects.

moonlight

10/17/10 4:48pm

Thanks, Janet, for your post!

It turns out that my son is now on Seroquil, although we are slowly increasing the dosage. At this point it is 300 mg/day at about 6 pm, but in a week or two we will be up to 600 mg/day. So it's encouraging that Seroquil has helped you, who like my son tried many medications. Perhaps it will work for him as well.

Glad to hear you found something! I know from first-hand experience how important that is!

Moonlight

Donna-1

10/16/10 4:36pm

My psychiatrist has said several times that I should carefully consider the following before I discontinue any antipsychotic (and I have tried many.) He said that once you go off of an antipsychotic that is working well, there's a chance it will no longer be effective. Scary thought. Zyprexa is the only one that works for me. Like your son, I really hate the weight gain and fact that I must take naps a couple of times every day. And I have battled in my mind many times whether the good Zyprexa does outweighs the bad side effects. And I have to confess it does. I would be in long-term care in a State hospital if it were not for Zyprexa.

Donna-1

10/16/10 4:37pm

(I meant it may not be effective when you try to start taking it again.)

moonlight

10/17/10 4:56pm

Donna,

Amazingly, I remember you mentioning about a month ago to me about how a medication, if discontinued, may no longer work again when it is restarted. That is exactly what happened to us with our son. Zyprexa worked miracles when he had his first psychotic episode; made him a new person in an hour, although he was far from totally healed, but he was with us again. (This happened in Norway, and the psychiatrist gave him an 20 mg injection and, within an hour, he was having a rational conversation with her. This was amazing.) Then later on we tried Risperdal, which didn't work, and then Zyprexa again, which returned my son to 99 percent good mental health, but then we had to stop it due to really bad side effects. (At the time, however, we didn't know how medication-resistent he was; otherwise, we would have found a way to keep him on Zyprexa.)

Anyway, after bombing out on three more meds after this, we in desperation went back to Zyprexa, and here is where your comment is 100 percent true. ZYPREXA DIDN'T WORK! How could that be? But be it was. This is not good, as now we have nothing to fall back on.

So, I would carefully consider backing off on the Zyprexa, as I know from experience it doesn't always work the next time. But you know this. Thanks for helping me with all this stuff; it's all new to me!

Moonlight

abigail

10/18/10 2:01am

For anyone diagnosed with Schizoprenia I would so encourage you to find a good orthomolecular doctor. But, ask first if they deal with these issues, some don't. Sometimes, there is a root cause going on... Possibly .. Thyroid... Possibly Hypoglycemia.....Possibly Histamine Imbalance Possibly Allergens - Even Gluten And, for women - Possibly Hormone imbalance There is hope :)!

Christina Bruni, Health Guide

10/16/10 7:42pm

Hi Moonlight,

Traditional neuroleptics as opposed to atypicals should not be overlooked: like Navane, Trilofan and the drug I was on successfully for 20 years: Stelazine. The side effect of the Stelazine was that I was drowsy in the morning and had trouble getting out of bed. But even with this side effect and the result of being late to many of my formal jobs I took the drug for 20 years because it halted my positive symptoms.

Going off the medication and attempting a permanent drug holiday is not a good idea for the majority of people diagnosed with schizophrenia. While the medication may not stop the positive symptoms it will protect from the further loss of functioning.

My good friend and an ex-blogger here Robin Cunningham found no symptom relief for the first 10 years of his recovery and his doctor kept trying all the newest meds until they found one that worked and then it was like a light switch went on and Robin had his life back. He became the CEO of corporations.

This sounds vaguely familiar what I'm writing. I have a photographic memory for a lot of things only right now I can't remember whether I told you all this already or someone else. It's quite possible I told you all this because I tell people this all the time.

I also remember telling someone that at times when the medication doesn't relieve the symptoms that is when cognitive therapy could be of benefit to a person to help them cope better. Robin Cunningham's psychiatrist was 50 years ahead of his time because in their weekly sessions he taught my friend cognitive therapy techniques to help him cope with the symptoms and function in the world as a young person.

The following excerpt is something I have pasted into my response from a NAMI Update I received in my e-mail inbox. I subscribe to NAMI updates for schizophrenia. I'm going to clearly demarcate the quoted section. You will see that I'm not the only one who recommends cognitive therapy.

The following question was answered by a psychiatric pharmacist:

NAMI Update:

Ask The Psychiatric Pharmacist #16

Part of my mental illness makes me hear voices. I started to take an antipsychotic to help with my symptoms. The medication helps, but sometimes I still hear the voices. Does this mean the medication is not working anymore?

Antipsychotic medications can help reduce positive and negative symptoms associated with schizophrenia. Hearing voices (having auditory hallucinations) is what is called a positive symptom of schizophrenia. Other positive symptoms that may occur include disorganized thoughts, visual hallucinations (seeing things that aren't there), delusions (strongly held false beliefs) and acute anxiety (pacing, restlessness, agitation). Negative symptoms of schizophrenia include lack of self-care, decreased thoughts or speech, inability to feel pleasure, social withdrawal and the inability to express emotion.

Antipsychotics reduce auditory hallucinations primarily by blocking the brain chemical dopamine from working in specific parts of your brain. After one to two weeks with the correct medication, voices begin to decrease and may continue to improve throughout the length of treatment. It may take four to six weeks to receive the full benefit of the medication. Many patients describe the voices as having stopped or being "muted" after several weeks; however, it is possible to continue to hear voices after an adequate trial with your medication. If you still hear voices while on the medication, it doesn't necessarily mean that the medication isn't working anymore. If you feel you are not getting adequate relief from your symptoms, tell your doctor or pharmacist as there may be a need for a dosage or medication change. It is important to take your medication as prescribed and return to your doctor for regular follow-up appointments. Other strategies, such as cognitive behavioral therapy, can be helpful to manage persistent voices. If you feel like the voices are unbearable or urging you to harm yourself or others, seek medical attention immediately.

Note:

When using medicines as part of your treatment, make sure to stay up to date on warnings, alerts and recalls at the U.S. Food and Drug Administration website, www.fda.gov.

Stahl SM, Muntner N. Antipsychotic agents. In: Essential psychopharmacology: Neuroscientific basis and practical applications. Cambridge, UK: Cambridge University Press; 2000:401-458.

Stahl SM, Muntner N. Psychosis and schizophrenia. In: Essential psychopharmacology: Neuroscientific basis and practical applications. Cambridge, UK: Cambridge University Press; 2000:365-400.

End of NAMI Update.

Lastly: I suggest you join your local NAMI to attend family support meetings where you can get feedback from other mothers and fathers about their experiences with treatment. Call the hotline at (800) 950-NAMI (6264) to get the name and number of the affiliate in your city or town.

Like I said recovery is a process not an endpoint. It could take years to find relief as mentioned. Success in recovery is always a moving target. What I mean is that each day or month or season or year a new treatment goal will become the focus. So the goal for your son now might not be the same goal he has down the road.

This is my idea of what I would want as a young person: a better quality of life and the ability to do well in my recovery. So it seems the goal would be that if I were a young person in recovery today I would do volunteer work or get a part-time job or make friends and do things socially and try to find a peer support group I could attend with other people who have SZ and other MIs.

Not to diminish the pain your son is in because of his symptoms and because of the side effects however I wonder if at some time in his life symptom relief if it is not possible right now would be secondary to achieving quality of life goals. And these goals can be achieved in the presence of symptoms.

Because the main thing is that your son needs to be able to function on his own when he gets older. So you might even start by having him do his own laundry and help you with shopping if he does not already do some of these things.

The more active he is I feel the less agony he will be in. Unless of course the symptoms are so debilitating that doing these things is impossible.

Only I feel these things will boost his self-esteem.

Never give up on the goal of total symptom relief. Understand that it could take time. If you read the guest blog I posted by David Wilson about Schizophrenia Treatment: A Collaborative Approach you will see that this social worker gave the advice that you should not settle for less or think "This is all there is."

Only I would make the case for developing coping skills and doing things now to enhance his quality of life and ability to function, in the presence of his symptoms, to prepare for the day when he actually has to do these things and will hopefully have no symptoms or diminished symptoms.

The main thing is that your son should take his medication every day as prescribed because partial compliance is often the reason why medications don't work or don't work as effectively as they could. I'm not saying this is the reason in your son's situation. It was the reason a psychiatrist gave at a NAMI conference Ask The Psychiatrist session.

I mean no disrespect by writing all this. I'm writing this from years of experience based on my own early recovery and the things I did to get better.

Regards,

Christina

Christina Bruni, Health Guide

10/17/10 9:46am

Hi moonlight,

A person does not have to go into a hospital when he switches medication.

My psychiatrist instituted a cross-titer from the Stelazine to the Geodon that took a year and then I was solely on the Geodon.

At no time did I have to go in the hospital.

However: your son could wind up in a hospital if he has a psychotic episode again.

The timing of when to put him in a hospital would then be of no concern because if he had an episode he would have to go in immediately, regardless of whether it was during the school year.

Something to think about before taking him off his meds completely with no safety net of coping skills in place.

Everyone I know with SZ who is doing well (an MBA, a person with another Masters degree and even those who collect disability checks) does well precisely because they take some form of medication.

I'm skirting danger here promoting medication to you. I know I'm skirting danger because I get the impression you have the strong urge to take him off the drugs completely.

I hope your son can find some relief I really do.

Like I said when a drug change is warranted it can be done outside of the hospital. When someone is psychotic the hospital is often the only option.

Regards,

Christina

moonlight

10/17/10 5:12pm

Thanks much, Christina! If the Seroquil doesn't work, I'm really hoping that we don't have to hospitalize my son, as that would be a major disaster for us. We would have to hospitalize him 2 1/2 hours from home, due to the disfunctional NY State hospitalization system; this would be not good. His psychiatrist did say hospitalization is not necessary, but we may end up with anyway, as my son was quite suicidal last week and may be in a bad way if the Seroquil doesn't work, and so may have to hospitalize him for this reason.

I actually see the medication as extremely important to his recovery and have done everything I can to keep him on medication. The thing is, he has grown cynical of the medications, as they haven't worked for him, and how he says that they have "ruined my life." I tell him the psychosis is the problem, not the medication, but I think the thought still rattles around in his head. I think he is so fed up with his situation, and just wants it to end, and the medication is a symbol of the entire ordeal, that he thinks if he just got off the medication, everything would be fine. He has always been very good to take his medication until about three weeks ago; he still takes it, but says things like, "Dad, what would you do if I suddenly stopped taking the meds?" Today he said, "Hey, it's in my power not to take the meds, isn't it? No one can force me, right?" Things like this.

Another problem I have is that my wife doesn't believe in the medication. She wants him off everything, and this is a problem. In one way it is them against me in all this, which is an uncomfortable place to be. My thought is to (perhaps) discontinue the medication at home with the agreement that if anything happens, he will agree to go to the hospital voluntarily. That way I am not against him, and he may just see that he needs the meds. But this is tricky in practice; we would have to admit him before he lost the ability to understand to admit himself, and that would not be good.

My own inclination is, if he wants to get off medication to "see how he is", that this should be done in the hospital: take him off everything and start over, most likely with Clozeral (yuck, but there are no other options at this point.)

So that's where we stand. If the Seroquil doesn't work, I'm not sure what we will do, as I doubt he will easily try Clozeral. I think it's part of his psychosis, but he's extremely conscious of his weight and doesn't want to be on a weight-gaining medicine. Who does? But with him it's sort of an obsession. And if my wife doesn't like medications like Seroquil or Abilify, I'm sure she'll love Clozeral.

We may be somewhat up the creek with all this. Hopefully not, but we shall see.

Thanks again!

Moonlight

Christina Bruni, Health Guide

11/14/10 10:51am

A new drug will come to the market in early 2011: latuda with allegedly a better side effect profile like less weight gain and metabolic effects.

I'm sorry your wife is resistant to having your son take the medication.

I will go to my grave championing early intervention with drugs and therapy after a first episode of schizophrenia. My mother drove me to the hospital within 24 hours of my breakdown, I was placed on Stelazine and here I am now recovered.

I understand that unfortunately the drugs don't work for everyone.

A good friend of mine wanted to end it all not because she was depressed: she wanted to stop the voices which were unremittant. His parents shopped him around to various doctors until they found one that prescribed the drug that took away the voices. It was trial-and-error for him to find the right drug only his family didn't give up.

I also understand the weight gain issue.

You are in a delicate situation. I hope it works out.

moonlight

11/14/10 5:57pm

Thanks, Christina. It's a long story, but my son voluntarily admitted himself to a hospital to try to get off the medication; after six meds that didn't work, I didn't see the harm to that, as through it he might have learned conclusively that he needs meds. Kinda' clear everything from his system and start over. I didn't want him to do this at home, as there is a safety issue involved.

It turned out they put him on 4 mg of Haldol in the hospital. They said this was a very, very low dose, but I'm finding out through the internet that it is really a moderate dose. So we may not have proved anything but wasted time. Do you know if 4 mg of Haldol is a low or moderate dose?

He obviously now just wants to come home, and is willing to take medication to do this. At this point the psychiatrist is thinking of putting him on Lithium and Seroquil to see how that works. My wife is 100% against this, which makes the situation only that much more interesting. Hmmm. She is also very much against a schizophrenia diagnosis; I'm not exactly pleased with this diagnosis myself, but reality is what it is, now isn't it? Surprisingly, my son is ok with it. He is actually quite a person.

I think I've kinda' lowered my sights a bit. I have always wanted a medication that could wipe out all the symptoms, but I'm not sure we will be able to achieve that right now. Perhaps in the future. If they could just put my son on something so that his voices and other symptoms were not totally unbearable, then we may consider that "success" at this point. He may have to learn how to manage the rest of the symptoms using coping skills. What do you think about this?

Thanks for your information and your perspective. At this point I am trying to get my son the help he needs and to also keep our family together. Weather I will be successful in either, we shall see!

Moonlight

Christina Bruni, Health Guide

11/15/10 10:23pm

Hi moonlight,

The pharmacist will know best whether the 4mg Haldol is low or moderate so I would ask him or her as soon as you can as I can't give you an answer tonight. You could call up the pharmacy in the morning.

The idea about cognitive therapy I don't want to keep preaching although I'm a big fan of it for helping with symptoms. I'm certain I must have recommended this so I'm going to refrain from being a broken record.

I hope you find some comfort here. It can't be easy what you're going through. Your son seems like a trouper. It must be the hardest on him.

Regards,

Christina

Zyprexa's out, now onto the sixth medication!

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