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luvsmom Asked April 2012

Has anyone had any experience with Seroquel XR?

My mother was taking Seroquel for the delusions she was having. She was taking 200 mg twice a day. She has fallen into a "donut hole" with her Medicare and the cost of the medicine quadrupled in price! Her doctor changed her to Seroquel XR at the suggestion of the pharmacy because the cost would be less, and she would be taking less pills in a day. The Seroquel XR is supposed to be comparable to the regular Seroquel, only release the medicine throughout the day. She has been extremely agitated and the delusions have increased since the change. The doctor has increased the mg but she is still not doing as well as she was. Will the XR work as well as the regular? How does the extended release compare to the regular one?

anonymous95109 Apr 2012
Luvsmom: That is great news. What a blessed cost savings. I hope it works for your mom and you can scratch that cost off future coverage issues. Thank's for letting us know. Hugs, Cattails.

luvsmom Apr 2012
Update on the Seroquel!! They have come out with a generic form of the regular Seroquel! Now, even though my mother is still in the prescription "coverage gap", the generic form only costs $3 for a two-week supply! So, of course, we have switched back to the regular form! The delusions are still there, but hopefully, they will decrease as she adjusts to the new medicine again. Life is good again!
Thanks again for all of the help, everyone!

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ShadowChild1 Apr 2012
Cattails has made a wonderful suggestion about pharmacists. They have been my greatest help throughout my child's 20 years of asthma and my illnesses. They want to help and realize doctors are moving so quickly that some of the medication issues are forgotten. Take care.

anonymous95109 Apr 2012
luvsmom: This may be a dead end suggestion, but talk to the pharmacist. They know so much about drugs. They tell me things the doc never mentions and you never know, maybe they have a take on the dosage for the extended release that they've picked up on over time. They won't want to be a substitute for your doc and they shouldn't be, but they can probably give you some good general info. Give it a try if you haven't already done so. Good luck and the donut hole sucks and should be renamed.

ShadowChild1 Apr 2012
I have had students switched to the XR type due to cost. They displayed a wide range of behaviors including the ones your mother demonstrates. Could you write or call the company that produces the medication and explain your problem? I truly believe some of the drug companies want to help people in your situation. I am not taking some of my COPD drugs for the same reason. They are just too expensive. You are not alone, but it is a tough choice. Best wishes and please let us know it you find a solution. :)

luvsmom Apr 2012
Yes, that makes sense that it prolongs the period. It was just taking her whole SS check to cover her medicines each month - $390 for a two week supply! She does not qualify for Medicaid. I guess we will just keep going the way we are and hope that the XR will start working. When we reach the $4900 or whatever the amount is, maybe we can switch back to the regular. Thanks for all of the advice!

jeannegibbs Apr 2012
One way to look at it, luvsmom, is that the donut hole lasts for a certain dollar amount. Using less expensive drugs prolongs the period you are in the donut hole. The total amount you spend is the same, and then the better coverage kicks in again.

Does your mother qualify for Medicaid?

luvsmom Apr 2012
Thank you for your response. She has been on Seroquel since September for delusions. She was doing pretty well on it - less agitated. Her delusions would get worse, then the Dr. would increase the mg. I wish she could have just stayed on the regular kind, but the expense was too much! I don't know when we will get the dosage right for the XR. Her delusions are really becoming a problem - looking for her cars that are "stolen" and threatening to call the police. I was just hoping that the XR will start taking effect soon - just concerned that one pill will not be enough for the whole day!

jeannegibbs Apr 2012
In spite of the cost, could she go back to the regular Seroquel for one bottle? There should be no difference, but "should" doesn't always work with mind drugs. If it was working good before, I'd try returning to the other form.

If that doesn't help, the doctor will have to try a different drug.

I wish you luck!

(And isn't that "donut hole" the biggest example of congressional stupidity you can think of?)

dgrey63 Apr 2012
How long has your mother been on Seraquel? I use to take it for my bipolar illness and it really zonked me out. I could not continue it, as I was a walking zombie. I did try both the regular and extended and could not tell any difference, just less pills.
I know there are countless people who do well on Seraquel, but I believe it can be a very dangerous drug for many.

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