Keppra - Alone or Adjunct

[BuckeyeFan]

When I first started Keppra in 2003, I was told that it was only to be used as an adjunct and not a stand alone anti-epileptic drug. I read up on it extensively the first couple of years and believed this to be true.

Since I have joined CWE, I have noticed several people that are taking only Keppra. Please share any differences you have seen with Keppra alone versus in combination with another medication (mine is phenytek)

2000 mg Keppra
500/600 mg Phenytek (dilantin)

========================

MODERATOR'S NOTE FROM BRAIN:

KEPPRA in Generic Formula is known also as Levetiracetam

[super]

Hi Costis

I have been on Keppra for 4 months gradually increasing from 500mg per day to now 3000 mg per day, and also taking dilantin (or phenytoin). I have noticed emotional issues associated with the Keppra as the dosage increases, but has settled down. I too was finding it intolerable and like you wanting to go off it, but my neurologist has advised that if so, it must occur slowly and in a supervised way, otherwise there may be serious risks by sudden reduction of this type of medication.

I have never experienced any benefit of taking vitamin supplements, and I am extremely sceptical about that form of treatment. Good policy always rely on your neurologist's advice and don't go it alone.

[xenome]

I take Depakote ER 2000mg/day and Keppra 2000mg/day. Once though, they messed up my prescription and gave me too much Keppra and when I was running low on Depakote I still had alot of Keppra pills. Due to insurance problems, I couldnt refill Depakote and so went off it, and had ALOT of seizures before I was able to get more. Then, I ran out of Keppra for awhile and I didnt have hardly any seizures. I dont think Keppra really works for me and I wish I didnt have to take it.

So for me:

Keppra + Depakote = Some seizures
Depakote only = Some seizures
Keppra only = ALOT of seizures

[mamaruns]

I've been taking Keppra as monotherapy for a couple of weeks now, and I'm not seeing a big difference in it lessening my seizure activity. I'm only on 250 mg twice a day though, and I doubt my doc will raise the dosage much. I don't think it's going to do much for me, either.

[brain]

I was put on 3000 mg Keppra
with 400 mg Zonegran and
the Keppra put me into a
state of psychosis and plus
other side effects in 2006
where I had to be taken OFF
of Keppra ... Keppra is on my
anti-epileptic drug Allergy list.

[angel]

I was taking 1000mg keppra alone had to go up 1250mg twice a month yes keppra helped my seizures taken off because of the side effects " uti's Depression couldnt stay awake"... also taking klonopin 1mg to a half a day... the klonopin im taking helps with dystonia so im not sure if i should count taking it with keppra...

[wvueers]

I am taking 3000mg of Keppra. The doctor told me the Keppra acts like a buffer to the 600mg of lamictal i take.

[brain]

I had added an addendum to
Buckeye's posting in the event
they did not know or realize it:

KEPPRA in Generic Formula is
known also as Levetiracetam

If you take Levetiracetam, you
can vote in this POLL too!

[maureen]

Your timing of this poll is amazing. I just had a seizure about 2 hours ago. I am taking Keppra (500mg x2 daily) and am reducing my Dilantin (100mg daily) for the last two months - I have reduced to 100mg daily for about 8 days.

One good thing, I am having regular blood tests tomorrow and I'm seeing a new neurologist next Monday (the old one left the province.) We'll have lots to talk about!!!

Maureen

[pmcdonald8]

My son was put on Keppra 500 mg 2X per day 8 months ago. Each time he would have a Grand Mal they would increase it we are now at 1500 2X per day.

However, just yesterday they said that recent EEG located seizure area to be in right lobe (they didn't specify which one) and that they felt three other meds worked better for that type (now Focal Seizure instead of General Seizure diagnosis)...Tegretol, yikes brain burp...will have to get my notes and re post the other meds.

So we will add one of thos to the Keppra and then reduce the Keppra over the next month until he is off it.

My son has been really "picking and biting" his nails since we increased the Keppra... seems very nervous, fidgity. But not so bad that I would remove the Keppra if it worked....but after a cluster of 4 seizures in 4 hours the other day Obviously NOT working.

Pam

[super]

Seriously I really don't think Keppra is for me either. It really knocks me around no energy, feeling total lack of strength in body, arms and legs like with WVEERS feel it may just act as the buffer to other medication but on its own would not feel confident. Dilantin has been good over many years, side effects less noticeable but possibly more insidious. Dilantin levels need to be monitored "protein binding" problem for me and Dilantin levels reach toxic levels in order to maintain control. It would be good to try medication with less side effects.

[pmcdonald8]

Ok, I now have my notes...focal seizure meds suggested by neurologist...
Tregretol
Trileptol (?Spelling)
Depakote

Going to do my research before doc calls to discuss.

Pam

[super]

I would like to know if there is anyone who having been on Keppra at what rate was it reduced whereby it became safe to go off it altogether, and how long did that take. Also are there side effects in reducing Keppra completely? No one seems to be able to tell me.

I have spoken with my neurologist on at least two occasions about the matter, and not received a proper hearing. My neurologist persists in telling me to stay on the Keppra presumably because it is one of the newer drugs and does not appreciate the impact it is having on my quality of life. The side effects of Keppra are absolutely awful and I have felt like a zombie as well as irritable, touchy and unhappy over the past three months whilst taking a reduced dosage of Dilantin (360 mg per day) plus 3000 mg of Keppra per day.

For many years my epilepsy was well stabilised taking just the Dilantin 400-500 mg per day. Dilantin is not ideal because of it's potential interaction with other drugs and medications, but it has been good for me in the main, despite some seizures very very occasionally. Dilantin blood levels have to be monitored closely and for me toxic levels of Dilantin are par for the course due to a "protein binding" problem.

I have found Neurologists have their own agenda, feed me with limited information about my condition, document everything said with a slant in favour of their own interpretation. I am not a happy chappie right now.

[BuckeyeFan]

I don't have any info for you yet. However, my neurologist and I discussed reducing either my phenytek (dilantin - time released) or my keppra. So, if this happens I will keep you in the loop. Being on 3000 mg puts you at the top dosage and that can mean worse side effects. I am on 2000 mg, plus 550 mg of the phenytek and I know I get plenty of side effects at that level.

Keep asking your neurologist. Demand an answer, even if he has to research it and get back to you later.

[pmcdonald8]

Spoke with my son's neurologist....he chose to stay with the Keppra (now at 3000mg - 1500 morning and 1500 evening) and not add anything else to it... His reasoning is that we only just upped the dose the day after the 4 G.M.s and he wants to give it a chance. So far no additional side effects. He still is picking on his fingers, but very happy, not irritable (knock on wood). BUT we have only been on this dose for 12 days. Do you guys think this is too soon to tell if the side effects will come? No seizures either (double knock on wood), but previously they have been coming every 19-24 days; so we will see.

[sunburst_kat]

Spoke with my son's neurologist....he chose to stay with the Keppra (now at 3000mg - 1500 morning and 1500 evening) and not add anything else to it... His reasoning is that we only just upped the dose the day after the 4 G.M.s and he wants to give it a chance. So far no additional side effects. He still is picking on his fingers, but very happy, not irritable (knock on wood). BUT we have only been on this dose for 12 days. Do you guys think this is too soon to tell if the side effects will come? No seizures either (double knock on wood), but previously they have been coming every 19-24 days; so we will see.

Hello My name is Kathy. I just read a few of your post about your son, and boy they really hit home with me. My son also has epilepsy and is on 3000 mg's a day of the keppra he takes 1500 am and 1500 pm. If you don't mind me asking how old is your son and how long has he had epilepsy?

[CQ:)]

I saw my Neurologist 2 days ago & he put me on Keppra. I am taking Keppra 500mg twice a day, along with Tegretol 400mg twice a day, Topamax 200mg twice a day. I haven't had any side effects from the Keppra yet but I have only been on it for a couple of days.

My Neurologist had increased my Topamax to the higher doseage in February & since then my memory has been really bad. I mentioned to my Neurologist the other day how bad my memory is now & he said that memroy loss or bad memory is a side effect of Topamax & I am on teh highest doseage of Topamax.

I have to ring the Neurologist in a months time to let him know how I am going with the Keppra, if I can go the month without taking any seizures then the Neurologist is going to gradualy start reducing the Topamax & maybe even take me of it. This way I might have a chance of getting my memory back.

[Sandee]

I take 500mg of Keppra in the morning and 1000mg of Keppra in the evening along with Lyrica 75 mg in the morning and at noon and 150 mg evening. I was being weaned from the Dilantin (400-500mg daily.) The morning I took my last Dilantin pill I told a friend I was really worried. About an hour or so after talking to my friend I started getting the aura I usually get before I have a seizure. My seizures always happen between 12-2PM. I had a seizure at 2 PM. This time I was aware of having the seizure which I have never been before. At the time I was taking the Keppra 500mg in the morning and evening and the neurologist increased it by 500mg. I am tired, irritable and gaining weight. I have been on sick leave from work since Jan 2008. I just told my sister-in-law I could become a hermit. I have no desire to leave the house and no desire to ever regain my license. Emotionally, I feel drained. Is it the Keppra doing this??? I go back to the doctor on April 14. I don't want to go thru another med change this year but I can't stand the thought of continually being this way!

[pmcdonald8]

My son is 16 (17 - April 30th) and he has had this round of seizures since November 2006

He had infantile spasms at 6 months old (started after the DPT vaccine)...we were able to stop those after first ACTH injection.

He then had 3 Grand Mals at 6 years old (started after the MMR vaccine)...we were able to stop those after Tegretol. Took Tegretol for 1 year only. Normal EEG and no seizures for next 9 years.

Just an update...no seizures for past 24 days since we upped the Keppra to 3000 mg...KNOCK ON WOOD (TWICE!).

Pam

[pmcdonald8]

Sandee, Side effects of the Keppra...I've read many and it had me greatly concerned for my son. However; I must say that he is doing great with it...at first I noticed a nervousness (figety... pacing and picking at his nails), but now that he has been on the 3000 mg. per day for 4 weeks... I don't see that so much.

Maybe you will get use to it. I hope so.

Pam