Tapering off decadron allowing seizures - 1254862

howardw
Posts:2

Hello everyone,

My mom has a tumor in her right frontal lobe She had cyber knife twice-once last September 2012 and January 2012. She was prescribed 6mg x3 dexamethasone for the brain swelling and 750mg x 2 Levetiracetam to prevent seizures. Last two scans show improvements in edema and she has been tapered to 2mg daily for decadron.

She was taking 2mg every other day when she had a seizure. The doctor increased the
Keppra to 1000mg x2 and we went back to Decadron 2 mg daily.

We tried again with the every other schedule and she had a small seizure this morning.

If the scans show improvement to where the doctor is stopping decadron why does she keep seizing? We would love to have her off the steroid as the swelling is bad on her feet.

Is she destined to stay on decadron while this tumor is present even if it's shrinking?

Howard

Forums

catdander
Posts:

Hello Howard, I'm very sorry your mom continues to have these problems. Steroids are notoriously difficult to ween off of. I really am not sure so will ask a doctor to comment. You should hear back within the day.

I hope your mom fairs well,
Janine
forum moderator

Dr Pennell
Posts: 139

Hi Howard, thanks for sharing your mom's story with us. Brain tumors that lead to seizures can be very challenging, and sometimes the seizures can take some time to bring completely under control. The steroids were started to decrease the swelling, and it seems that is working. However, the tumor itself also causes damage that can lead to seizures, and there is only so much that the steroids can do if swelling is not causing the problem. As you noted, the steroids also have consequences so it is better if they can eventually be stopped, although sometimes a very long taper is needed.

If seizures continue to occur as the steroids are tapered off, the anti-seizure medications often need to be increased and sometimes even more than one medication is needed to control the seizures. Although the specifics of managing these medications is very individualized, most patients can eventually stop the steroids and also be seizure free as long as the cancer is indeed controlled and the swelling is resolving.