Weaning off keppra to start monotherapy

[Cherriuz]

Hi, hopefully someone can share their experience, I'm currently taking Keppra and lamotrigine, and I'm about to start weaning off the keppra at a rate of 250mg every 2 weeks
Has anyone else weaned off Keppra? Were there any side effects?
Getting kind of nervous now
Can't start until my next period comes which is very soon!
Thanks for reading
X

 

[cawhitern]

I'd be interested to hear as well. I'm on Keppra and not tolerating very well. Also on Vimpat. Adding Lamictal and then going to wean off Keppra. Anyone feel better after getting off Keppra?

 

[Ruth]

I just found out that Gabapentin (Neurontin) and Keppra can cause kidney problems. I am having kidney problems. I have been on Gabapentin and Keppra for years.

My neurologist is weaning me off of Gapapentin. She will probably take me off of Keppra next.

I just started today. I am on 4 Gapapentin instead of 6 now.

I am in severe pain from my kidney. I was told by the doctor to eat as less meat as possible. I only eat a little bit of meat 3 times a week.

since you are not tolerating Keppra very well, Have a renal blood test. That will show up whether or not you have a problem with your kidney. My test showed up normal but I still have problems with my Keppra.

How did I find out that I have kidney problems? I went to see my Gynecologist and she wanted to order the ultrasound test. My regular doctor decided to do the test himself. Only he did a CTscan W/WO contrast.

 

[cawhitern]

Sometimes I feel like the cure is worse than the disease. Our meds have so many side effects. Keppra had me crying and depressed, I had chills and felt awful. I've only been on it for a few months. I have to stay on it while they very slowly ramp up the lamotrigine dose.

 

[Dignan]

Another thing about keppra, my neuro says it doesnt need any blood tests when you take it, since its not processed in the liver. (When on Dilantin, I had blood tests every 6 to 12 months.

Now from what Ruth says, it makes me wonder if they should be doing kidney tests for people taking keppra. Or would any kidney irregularity show up on normal CBC and urine tests during a physical?

I've been on keppra for 4 years, and i took neurontin for 10 years before that.

 

[cawhitern]

My epileptologist told me that Keppra wouldn't effect my liver or kidneys. I'm starting to get frustrated. Seems I always get better info here. Jeez.

 

[masterjen]

You got me curious so I looked up "tests for renal function" and came across this: https://www.kidney.org/atoz/content/kidneytests It would seem that blood tests, urine tests, imaging tests and possibly kidney biopsy if other tests are positive identify kidney problems. I definitely think the blood and urine tests should be done for medications such as keppra that can affect renal function. Supposedly the risk of keppra affecting renal function is small, and usually only happens in those who already have or are at risk of having renal problems.

 

[Dignan]

Ca, I know what you mean. It feels like total guesswork, which I suppose it is. My neuro has said many times with meds, you just have to take them and see how you do..

Ruth, if you don't mind me asking, how long have you taken keppra, and had anyone warned you of potential kidney issues before, or done any monitoring of any kind?

 

[Ruth]

Another thing about keppra, my neuro says it doesnt need any blood tests when you take it, since its not processed in the liver.

Now from what Ruth says, it makes me wonder if they should be doing kidney tests for people taking keppra. Or would any kidney irregularity show up on normal CBC and urine tests during a physical?

I've been on keppra for 4 years, and i took neurontin for 10 years before that.

I have been on Keppra for about 10 years and Neurontin longer than that.

They have been taking blood tests every 6 months or yearly. It's the renal blood panel screening test. It showed up normal this year. That's while I was in pain. That's the Kidney test.

My neurologist wasn't surprised that it showed up normal. She said that those 2 medicines can cause kidney problems. I believe her. My pain is in my abdomen, pelvis and back.

She's taking me off of Neurontin first. I have a thread about it, too. Gabapentin, Keppra and my kidney.

 

[Cherriuz]

Owh! I did not know that about keppra, thank you for this information, if it wasn't for this website and you lovely lot I'd be totally lost because my neurologist just puts me on stuff with no conversation because she's always running late and rushing!

 

[Ruth]

Hi Cherriuz,

Sounds like we have the same doctor!! Is Derby in Ireland?

How are you doing, getting off of Keppra? How is your Doctor doing it? I will be taken off of Keppra next.

 

[marika853]

Hello All,
I have been on generic Keppra since 2006. I take 750 mgs. in am and 250 pm. On Sunday I started reducing to 500 am 250 pm. I'm supposed to do this for 2 weeks then start to 250/250. I asked my dr to do this since I haven't had any episodes for a long time and am going on vacation June 1st. I will not be driving and will be with family, so if something should occur I would have people with me. Otherwise, I live alone and would be afraid to try this.
Today is my 6th day and I am fine. Just noticed that I get a little dizzy when getting up but nothing serious. I haven't really had any major issues with Keppra so I have been one of the lucky ones. My dr. also said that this would not affect my kidneys. I would like to get off totally but like everyone else here am afraid of "what could happen."
What makes it more scary for me is that I am alone and don't know when things happen.
Any medication that you take for a long time is bound to affect your body.
M

 

[Cherriuz]

Derby is in England Ruth, in the east midlands, near Nottingham
Shes taking me down 250mg in the evening for 2 weeks then 250mg in the morning for 2 weeks till I get to nothing
Im on 175mg lamotrigine twice a day now and the bloodwork to check the level of that in my blood has come back normal so it's time to start lowing the keppra!
Today is day one and it's the evening dose that is going first so I shall report in later
Marika, I know exactly how you feel with the being alone part - single parent of 2 boys right here so if you ever need support just message me

 

[Ruth]

I live in CA, USA. If I ever get to England, I will look up Derby. I know England is a beautiful country. Part of my Ancestry is from Scotland.

My doctor has started by taking me off of 600 mg of Gabapentin (Neurontin) a day. She's taking it real slow with me. I have a tendency to have Status Epilepsy when I am taken off of meds. After I am completely off of Neurontin, then she will start taking me off of Keppra.

Keep me updated!!

 

[Dignan]

I have been on Keppra for about 10 years and Neurontin longer than that.

They have been taking blood tests every 6 months or yearly. It's the renal blood panel screening test. It showed up normal this year. That's while I was in pain. That's the Kidney test.

My neurologist wasn't surprised that it showed up normal. She said that those 2 medicines can cause kidney problems. I believe her. My pain is in my abdomen, pelvis and back.

She's taking me off of Neurontin first. I have a thread about it, too. Gabapentin, Keppra and my kidney.

This ticks me off. My neuro has never done any blood work at all associated with my taking Keppra. He has always claimed it wasnt necessary.. Ugh.

 

[cawhitern]

They've checked my Keppra level Dignan. There definitely a therapeutic level but it isn't monitored as closely as Dilantin.

 

[Ruth]

From the time I was started on Keppra, I was given blood tests every 6 months. He also tested my other medicines.