Help Me Wean Off Keppra XR

sicily726

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Thanks Eve and Meetz. I take Vitamins B and C, was finally able to sleep a little this afternoon, and I will keep the melatonin in mind.
 

whisper

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Hi. Just like every AED I ever took, Keppra XR is ruining my life. I would very much prefer to have seizures. I've gone round and round about this with my neuro. I got depression, anxiety, insomnia, angry outbursts, thoughts of suicide and dying on this drug. I am sick of it. I used to be a happy person with seizures all the time. Now, I am a miserable person with fewer seizures. I am sick of the drugs. NO MORE DRUGS!

I want to wean myself off of Keppra XR as safely as possible.

I take 1500 mg in the am and 1500 mg in the pm

If I wean myself 250 mg at a time, for two weeks at a time, starting with my night time dose, will I avoid status epilepticus?
The more i read about this drug keppra ..saddens me for all who have sufferd the side effects ..i just want my girl back ..now that she is weaned of it ...fingers crossed ..her future will be bright ..as the sparkle in her eyes has gone since they put her on it ..
 

momof3boys

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I was taken off of Keppra when told I was having psuedo seizures, no weening off just stopped! I was taking 3000mg keppra xr! I still have seizures but since nothing showed up when while being monitored in the hospital, the doctor took me off and I have not even heard from my neurologist. Not one peep from him.
How did things turn out?

Im pretty much in the same position as you were in. Im currently taking 3000mgs of Keppra XR, and at my last appointment in May of this year, there was talk about admiting me back to the hospital to take me off the Keppra XR! The weird thing is that I was given a VEEG in march of this year which showed slowing in the left temporal lobe, and thats why my dr put me back on Keppra. before the VEEG, I was on Keppra and Carbatrol. But due to not being able to have a grand mal like he wanted me to have, he said that the Keppra should hold me.

I was just wondering how things turned out?
 

G Girl

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I weaned myself down to 500mg from 2500mg in just a two weeks and seem to be doing okay. I was taking the generic and having seizures, so went down to 500mg and switched to the few name brand Keppra XRs I had left and was supposed to get a refill from the mail order pharmacy but they sent the generics instead. So I'm not taking any meds until the name brand shows up. I don't want to do it this way and am scared but I hate the generics so much. It will be about 10 days so I hope I do okay. I haven't told my neurologist because I know he won't recommend it but even with insurance I would have to pay $500/month for the name brand vs. $10 for 3 months of the generics. I've filed appeals and my HR admin has sent complaint letters on my behalf and we are getting the runaround from CVS Caremark. It's so frustrating. They told me that I could pay out-of-pocket for a bridge until the prescription shows up in the mail but couldn't be reimbursed. These people just do not care, it's sad. I have a 17 month old son so want to be okay for him so I'm especially scared but I just hate those generics and side effects so much and was having seizures on them anyway.
 

momof3boys

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GGirl-

Thats so frustrating when you get the run around from insurance companies. I hate the mail order pharmacies too. Our insurance changed things as of July 1, 2011. We can no longer go to a local pharmacy and get a six month supply of medication. We can only get a 1 month supply. All 3 or 6 month supplies have to go through the Express Scripts Mail Order Pharmacy. back in October, I had a complete run around with them. I got my Keppra XR brand name, but when it came to my Glucophage XR, I got the generics! I told them I couldnt have the generics due to the bad side effects it gave me. It took me weeks to get that crap straight with them. Luckly I had a few extras on hand, but I was so dissapointed in them. They gave me exscuses like the reason they gave me generic for my glucophage was because they sent a form to my dr who ok'd it. But when I contacted my drs office, the nurse said she "might" have said ok, but wasnt for sure since it said right in my chart I couldnt have the generic. So who know's who's fault it was. All I know is that It wasnt a good two weeks fighting with them over the phone. I hope everything goes well for you and you dont have any seizures. I could check to see if I have any extra 500mg tablets of Keppra if you would want them?
 

Eve

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I totally sympathize with you G Girl. I had to wean myself off the Keppra XR to go on the regular Keppra it was tough. The secret is to do it slowly and with a doctors consultation.

I know how you feel about the express scripts 3 Moms I have had it for 2 years and dont like it. About once year they try to to trick me into taking the GENERIC keppra . My doctor has had to send them 2 letters that he would prefer I take the Brand Keppra. He does not like the generic Keppra at all.
 

G Girl

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I found a bottle with a few pills, thank goodness!! One thing that caught my attention on the last phone call we had with the prescription insurance was that they were penalizing me for requesting the brand name and when my doctor wrote that HE wanted me to have the name brand they allowed it... so how the heck does he write brand name medically necessary (I saw it on the script) but it's my request, not his? Just another loophole for us to run around and go crazy over. I felt soooo good taking the Keppra XR last night after skipping a day. I know people complain about rage but I really don't like having seizures, I don't know anyone who does.
Of course I would love any Keppra XR I can get, and you are so kind for offering!! I think I will be okay. Hopefully the meds show up sooner than the 28th. I think I'll be okay until then with the few that I have. But I'll let you know if I feel like I need help! :) Happy Saturday to all!!
 
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