Your thoughts please, stopping Zyprexa cold turkey

[Hanging-On]

I'm backed into the wall, and I have no choice but to stop difficult child's Zyprexa cold turkey when it runs out on Sunday night. His monthly bill for this medication (alone) is around $750.00/month. We've been helped by his first psychiatrist, who gave us samples for his monthly dose. She's been doing this for over a year, but she can't continue. Every where else I ask, the answer is the same....they can't help. With him being out of school, and sitting home with a sitter which costs me between $1,700 and $2,000 a month, leaving me NO money left for any other bills. So my parents are helping me by paying these. But his total medication bill per month is $826.00/month. Without difficult child going back to school, or any medical assistance, I'm being forced to stop his medications.

Has anyone done this, and what should I expect? And to answer a question that will probably come up....Yes, I told his medicaid case worker this and could she speed things up, and Yes, I went to the free clinics, and Yes, I spoke to the hospital where they started this, and Yes I've call our insurance company to beg them for help. Everyone says it's not their problem. Oh, and Yes, I've looked into Canadian drugs.

 

[house of cards]

I don't have any real experience so take what I say for what it cost you. I understood the risk from Zyprexa is that it can throw your glucose processing system out of wack so I always increased and decreased slowly, But I have heard of others that were given Zyprexa to use, or increase, as needed to control aggression. I don't think it is great to do it cold turkey but I would think you will be ok...just not ideal. I would watch for any signs of high or low blood sugar, or any signs of increased thirst, lack of energy, peeing alot. Hope this helps

 

[kris]

okay, i'm still gobsmacked at the school situation. why is the cost of your daycare so bloody high??? might you qualify for any indigent program....your psychiatrist should be able to hook you into that. what precisely is the difficulty with-getting him on medicaid?

sorry. more questions than anything else. i'm screwing on my thinking cap right now. maybe someone else will have some ideas for you.

oh & the answer to your question is no, i would not cold turkey the medications. he needs to be weaned. actually he needs to stay on them!

kris

 

[timer lady]

Zyprexa Rx Assistance Program: 1-800-545-6962


Resources that may help.

 

[Hanging-On]

Oh, I forgot. A very nice doctor, who was personally upset with the way the insurance company wasn't paying for difficult child's medications, called the insurance company personally and the Rx sales representive for help. The insurance company told him the same thing they told me (Zyprexa was taken off the formulary last year....end of story). The sales representative said no for two reasons (the same reasons I got when I called them and when I applied online). 1) difficult child has insurance. 2) difficult child's use of this drug is against the Rx's usage statement. Minor's are not suppose to be using it, so it's going against the original use. I forget the term that summarizes all of that. So they will not help him.

The situation with the school, is that they want to transitition him back into school slowly. Their words. In reality, they're scared to death of him, and they want him to basically go away. Their lawyer's words, per my lawyer. SO, we are giving them alot of rope to hang themselves with. Last week they came to our IEP meeting without ANY plan or suggestions. They had a month to find him a place, and a teacher. My lawyer sees this, and she's telling me to let them hang themselves especially since I am coming up with alot of solutions and they keep saying no. Also, my lawyer says that once I file my complaint in court, whatever difficult child has on an IEP will be locked into place. We'll be in a holding pattern until everything is resolved legally. So she wants to try and get him as much as possible before we file, and she wants to give them the amble opportunity to their own case. All of this bites, but it's where we are at. I'm trying not to sabotage difficult child's legal battle (which in the long run should really help him) but it's killing us now.

Also there is NO daycare for children his age, so I've been forced to hire a private person. This is why it cost's so much. I'm paying her hourly, just like you would if you went out to a movie and left the kiddies at home.

 

[Hanging-On]

Thank you I'll try again by calling the number you gave.

 

[DammitJanet]

If he has prescription coverage on his medical insurance, then he probably wont qualify for patient assistance programs but call them anyway and ask and beg. Try calling NAMI and ask if they have any ideas. Maybe try calling local mental health and see if they have any ideas. Sometimes you can actually get your medications at their offices at a sliding scale.

 

[dreamer]

Have you looked up zyprexa withdrawl? Some medications withdrawl can be life threatening.
Maybe your local Red Cross, or Salvation Army could help provide you enough to do a careful weaning off?
I know in some areas towwnships also help with medications. How about a neighborhood church (whether you belong to the church or not?) or the church of a family memeber or friend? I have heard of all those places helping in the past.
Have you talked to a pharmacist? They might have new ideas on how you could handle this, getting help to get some medications.

I do not remember for sure but seems to me zyprexa may be one of the drugs that is dangerous to stop cold turkey, and doing so might cause an emergency hospitalization. (I really do not remember becuz I have no personal experience with this medication)

 

[Hanging-On]

Thanks Janet, but unfortunately I've done what you asked and they say they can't help.

 

[Hanging-On]

Thanks Dreamer, I have one more thing I'm going to try. We have an appointment tomorrow with the new psychiatrist that the hospital referred back in early Jan'07. Yes, it took them over two months to get us an appointment, even though I kept telling them the severeity of this. Any way I'm to flatly tell the doctor that unless they have samples for difficult child's monthly dosage, that he's out of them on Sunday. This guy's the psychiatrist so I'm sure he'll know the severity of this situation and let HIM try to solve it.

 

[slsh]

Just my opinion - I certainly wouldn't stop any medication cold turkey without discussing it with- psychiatrist. I would be very concerned about possible withdrawal effects - especially with an antipsychotic.

I absolutely understand where you're at with- insurance and cost, etc. Rock and hard place doesn't begin to describe. Sorry - hope psychiatrist says this is something that can just be stopped.

 

[Hanging-On]

Thank you all very much. It seems that all I write about is tragic and horrible situations. Frankly I'm getting real tired of this black cloud above difficult child and us. I'm very bitter right now. I've been asking for help since this boy was born!! Everywhere I go they tell me it's not their job. He's either to young, to old, not on insurance, on the wrong insurance, doesn't qualify cuz he has insurance, doesn't qualify cuz of my income, they don't have space, they don't handle such cases, they don't help with drugs, etc, etc, etc. I am in "grey area" h.e. double tooth picks. I just don't know what to do anymore. Everyday I feel like giving up, but cuz I'm a stubborn determined person I just keep going. But we're going from bad to worse, and it's all because I CAN'T GET THE HELP HE NEEDS!!!!!!!!!!

(Sorry, I changed my mind and deleted my last sentence. It could be taken political. I didn't want to change the discussion the wrong way.)

 

[Hanging-On]

I agree with what everyone is saying about stopping the medication cold turkey....but I have no money to buy a refill. None, zero, nada. So I can't get a refill, so stopping on Sunday is the only thing that's going to happen. What am I suppose to do???

I have been this blunt with EVERYONE, and NO ONE is stepping up to help us.

 

[dreamer]

Thats a horrible place to be, and one I have also been in far too many times.
First with husband and then oldest difficult child and then my youngest. I also know the waiting on wait lists for docs. My son had an abnormal MRI and some problems and he sat on a neuro wait list 9 months. Oldest difficult child sat on a start up dose of a medication at our county agency beciz the psychiatrist quit and it took them 11 months to hire a new one.
I remember being told my husband could not get help cuz he was "an adult" when he first became catatonic.......
and yes, I am living proof of the effects of not getting medications y ou need for a medical condition, while waiting for my Medicare to kick in, and my medications coverage- (it took over 2 years) several of my bones began to dissolve and other wonderful effects like that happened)
The whole system stinks.

 

[Janna]

Obviously, the concensus here is it's a bad idea to stop the Zyprexa. It's probably that way with the majority of medications our kids are on.

You're stuck between a rock and a hard place with no options at this point. Hopefully new psychiatrist will give you samples, but if not, you sound like you have no choice but cold turkey.

I'm keeping fingers crossed for you and praying for a positive outcome. I hope you find something helpful before Sunday.

Sending hugs, Hangin,

Janna

 

[Hanging-On]

Dreamer, difficult child had an abnormal eeg with epilectic spikes in November '06. I just got in the mail his appointment for the neuro-psychiatric in Oct'07!! This whole thing is just a sad joke.

 

[dreamer]

I know- it is nuts. VA said my husband needed angioplasty- or maybe bypass, but- it took them 2 years to schedule it.
Another time he had some evaluations done and they did not set the appointment to discuss results for almost 1 year.
None of it makes any sense to me.