Hello Everyone, I have now been using this site for a few weeks but have not come across anyone saying that they are using Keppra.
My question is has anyone ever used it and if so how did they manage with it? It is the first drug I have been given for RRMS and would be very interested if anyone else has used it and indeed found it helps, I am also on Clonazepam at night which zonks me out completely.
Be grateful for replies
Janet x
Hi Janet.
I just had a wee look on drugs.com (the best website I know of to check out drugs). It seems it’s normally for epilepsy, but also myoclonic seizures / spasms / jerks (which is what clonazepam is used for too I think?). I started on clonazepam, but (like you said) it zonked me out completely. It also didn’t stop my spasms, so I was put onto baclofen. It’s been good (in combination with pregabalin), but I didn’t know there was an alternative - making me wonder if I should be asking about Keppra too - maybe it doesn’t relax the muscles so much? That would be cool!
Please let me know how you get on with it? I’d love to know.
Karen x
Hello Karen,
I have been taking Keppra for quite a while now, but having seen my neuro again and said I was still getting the myoclonic jerks she decided to increase the dosage of Keppra to 1250mg morning and night. Then if the jerks had improved she would decrease the Clonazepam. I am on 3mg at night at the moment.
I start taking the full dosage of Keppra tomorrow night (1250) as you have to increase the dose very slowly. My legs are not feeling like jelly at all, they are stiff, especially after sitting down for a period of time. My legs are always cold and my feet, well I cannot stand in bare feet as it hurts to much. Having said that they don’t hurt as much as they did before I started the Keppra. I have had a side effect of mouth ulcers but not sure if it’s caused by Keppra or the fact I also have Lupus. I still walk round in circles at times, not being able to decide which way my legs want to go, but I guess that’s just parr for the course.
The jerks are less frequent now so I’m very hopeful.
My neuro did say that I can actually increase my dosage to 1500mg morning and night if things didn’t improve.
I still get very tired but I do feel better in many respects and am hoping that once my body gets used to the new dosage I won’t have to increase it any more and with luck reduce the Clonazepam.
I know Keppra is a drug used for epilepsy as I was first tested for that but it turned out to be MS. It seems to be doing the job for me. Fingers crossed.
Might be worth a try as my legs do feel stronger, not like they were.
Hope this helps, as they say nothing ventured nothing gained.
Janet x
Thanks Janet. I hope the new dose goes well for you.
Btw, amitriptyline gave me terrible ulcers (mouth and throat) and I was told to stop taking it. Please tell your nurse/neuro if yours get worse!
Kx
Hello Karen,
Just an update, the ulcers have now gone so I am really wondering if it was because of having Lupus as it is a common complaint with Lupus and nothing at all to do with Keppra. Time will tell.
Janet x
Good news! Glad it wasn’t the meds at least.
Kx
Thanks Karen
Janet x