~~Steroids water down anticonvulsants ~~

[Grammy80]

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, a significant 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

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. 💞

[123-go]

Hello, dear Grammy! How lovely to hear this. To be able to pick up doing things that bring you joy is wonderful news.😀💐

[DorsetLady PMRGCAuk volunteer]

Good news for you at last - and thanks for cautionary tale..

[Grammy80 in reply to DorsetLady]

You know....when there are lots of hornets in the nest.....sometimes it is hard to figure out which one is stinging you~!💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Very true… 🐝🐝

[Poppeye]

Hi...I take Keppra (Levetiracetam) twice daily and was on Prednisolone for eight months but I didn't notice any difference. You were on a high dose of both, I take 1500mg Keppra daily and my max dose of Prednisolone was only 15mg. I don't think anyone who is on a relatively low dose would need to worry. But then everyone is different! PMR was fairly easy for me but I wouldn't want to be without my anti-seizure medication. I hate epilepsy!

[Grammy80 in reply to Poppeye]

Yes, Poppeye...I love my Keppra and had no problem until my dose of pred was raised last year. I had been at zero June 2025(with Actemra) for only a month when I needed those infusions because my neuro-ophthalmologist saw a decrease in the vision in my right eye; he acted quickly. Then I was put on 60 mg for three months which caused some auras. It was when I got to 8mg per day that my Keppra level was noted as toxic. My dosage of Keppra was cut from 2500per day to 1500mg; yes, I was nervous but there was no incident~!! ...and my Keppra level dropped from 68 to 32 in one week~!!

I'm 84 and now have 50 years seizure free.....though it is some times a pain in the paddupah... I say Viva Keppra and Prednisone...wouldn't want to be without either~! My best💞

[Poppeye in reply to Grammy80]

I have had a mostly trouble-free lifetime with epilepsy too. A major seizure as an child, several years on Phenobarbitone, then nothing for most of my adult life except for periodic "episodes of weirdness" as I call them, which I have just put up with. Then a couple of years ago, aged 69, I had a major seizure and was started on Keppra. A month after the seizure, I developed PMR, I have always wondered if there was a link. Did the shock of the seizure trigger the PMR or the PMR trigger the seizure? I think that our brains probably change as we get older, just as our bodies do, and perhaps the mechanisms that suppressed our seizures during our younger years aren't working so well any more. I have been lucky with my doctors, I trust them and I no longer get those troublesome "episodes of weirdness" thanks to Keppra...and my PMR seems to have gone thanks to Prednisolone. I am still ache a bit, but at my age, what can I expect...!

[Grammy80 in reply to Poppeye]

I think you are amazing....I know just what it takes to stick some of our issues in our back pocket and do our best at living life. So many on this forum have inspired me. Yes, we just have to embrace some pain...kind of a trade-off for having lived so long! My best to you~!!!💞🏆

[diana1998]

You are a real Star 🌟💫 and cope so well in an upbeat way Grammy. 💐🌷

[Frewen1]

I’m so impressed at your upbeat and stoical attitude to your life … wishing you all best things … Karen x

[Grammy80 in reply to Frewen1]

Big thanks, Karen, and big thanks to the people on this forum. x💞

[Temoral]

Great news Grammy...painting...how wonderful. 💐 sending 🫂x

[Grammy80 in reply to Temoral]

🫂🤗x Thank you...I can get so wrapped up in it...hours pass. 💞

[HeronNS]

What a relief it must be for you to be able to get about more easily and enjoy your garden again. Excellent! 🌺

[Grammy80 in reply to HeronNS]

Yes, and I'm so thrilled I think I am going to purchase another scooter~!! The awakening of spring and my body is a real boost. Thanks!!💞

[Ginntonic]

Hello Grammy 80, like you I have been on anticonvulsants, phenytoin, for about 70 years and not had an attack for 53 years. I then got PMR, went onto steroids, Preds, but after 5 weeks I was still in a lot of pain whereas all the information said I should be ok after 3. My research then threw up that steroids are nullified by anti convulsants. Pity the GP didn’t mention it!

I now take the Preds in the morning epilepsy tablets at night. And all seems to be working well.

But you are right people need to be aware of this, you have a risk of unnecessary pain or possibly an increased risk of an attack if you take the medication together.

[Grammy80]

We are all so unique...and special, aren't we? I'm so glad you worked out a system that is keeping you balanced and well. I'm in the states, and I can guarantee you many GPs or even neurologists 'don't mention it.' I think it is just too rare. We are the best keepers of our bodies. I felt, like you, it was just a good thing to keep in mind. Once my body adjusted to Pred and Keppra in 2019, never had another issue until October 2024 and now I'm back on track~!

Take care💞