My story~the effects of long-term steroids on anticonvulsants..both necessary for me~~~

[Grammy80]

I have a few chronic issues...like many of us. This is cautionary about the effects of steroids on seizure meds. I've been on seizure meds since 1955, my first grand mal at age 15. In 2019, I was diagnosed with GCA and lost the sight of my left eye. Because of the sight issues, my steroid dose was always pretty high to save my right eye.......so here is my tale and how to juggle.

When I was diagnosed with GCA in 2019, I was on a low-maintenance dose of seizure meds because I had been seizure-free for 44 years. Initially, I was on 125mg of prednisone per day, and after three months, I experienced some auras, that warning one gets before a seizure. I was hospitalized and given infusions of Keppra (anticonvulsant), started on 80 mg of prednisolone and Actemra. Things stabilized, and I went home, still seizure-free. I was so foggy, I don't recall how long I was on that high dosage~~but I was having vision issues.

Thank goodness I found this forum. I've traveled with all of you since 12/19. You have made the rollercoaster ride smoother-- and hopeful.

I'd remained on 2000 mg of Keppra per day until I had that bad flare last summer and needed three days of IV steroids, 1250mg prednisolone per day. Then, I began having auras again, and my Keppra was raised to 2500 per day last fall. Two weeks ago, I had a blood test for the Keppra level, which was 68, compared to 32 last fall. The high end of the tolerable therapeutic level is 46. No wonder my balance was really off; I was dizzy and sleepy.....my body felt good, but if I sat, I fell asleep and had no strength; I was using my rollator in the house.

Then, the neurological NP I saw lowered the dose to 1500 mg per day, which is a big drop that I found unnerving. I had to take the lower dose and did it with my fingers crossed because I was told that the high level could cause a seizure.

The difference: steroids. When the 2500 was prescribed, I was taking 60 mg of pred per day and did for three months because I had vision issues. I've been tapering and now am on 8mg. One week later, today, my Keppra level was down to 33. After just three days on the lower dose, it was like someone blew the fog away, I've been walking with just a cane outside, painting, and staying awake all day. I'll be stopping at 5 mg and, hopefully, can remain on that with no problem. Both the rheumatologist and neuro-ophthalamologist agree. xo

At 84, I am now 50 years seizure-free.

Just a word of caution to anyone who may be taking both meds...I hope it makes sense. My confidence in her is lost, and I'll be switching practices.

I'm going to post this on the Epilepsy forum as well. 💞

[Whyme89]

I take 2000mg twice a day. My Neurologist told me this is the maximum one should take.

[Grammy80 in reply to Whyme89]

I'd say your neuro is on target....except after having 3 days of Pred infusions and staying on 60 mg a day; I started having auras, so she increased it. If definitely affected my BP, heart rate, limbs etc. Thankfully, now it is much better.😉

[Whyme89 in reply to Grammy80]

Hey that's great news that you're now at a more stable level in regards to your dosage. I take Tegretol as well as Keppra. I've been seizure free since 2019 now 💜

[Grammy80]

😄😃Wonderful~! I took Tegretol some years ago also. It sounds like you have good monitoring....and a good doctor. I've had some great neurologists over these 70 years (my first seizure was age 15). Now, I'm not so confident. Enjoy your day....or is it evening?🤔💞