Epilepsy Talk

Seizures and Steroids | December 5, 2016

I always thought that steroids were the kind used by athletes and bodybuilders to pump up their performance. Yes, they do exist and, yes they are quite dangerous, but those aren’t the kind of steroids this article is about.

In fact, anyone who has epilepsy should NOT take anabolic steroids because they may change the level of anti-epileptic drugs (AEDs) in the blood and may make seizures more likely.

The steroids I’m talking about are naturally occurring hormones. Common oral prednisolone or less common/higher risk ACTH — which have a place in the management of severe epilepsies.

Steroid therapy for epilepsy management is considered unconventional and certainly not a decision to be made lightly because of the serious risks and undesirable but common side-effects.

A person can undergo steroid therapy for only a limited period of time; he/she cannot remain on steroids forever.

Unless the epilepsy remits within the course of treatment, steroid therapy will need to be followed with an alternative AED, once the steroids are stopped.

How and why steroids work to control epilepsy is poorly understood.

Specialists assume it has a useful anti-inflammatory action, but it is probable that the release of particular hormones (stress hormones) and their effect on the brain’s cortisol receptors and stimulation of the adrenal glands is thought to be beneficial too.

One thing is known, steroids can seem like a wonder drug when other treatments have failed.

“Anti-inflammatory therapies could at least supplement, and perhaps replace, anticonvulsants,” said Dr. Jacqueline French, a neurologist at the N.Y.U. Comprehensive Epilepsy Center who is leading the new trial.

Even though it can be a wonder drug for controlling seizures, some treating doctors will still refuse to prescribe steroids, because they believe the side-effects are potentially too harmful compared to other AEDs.

Yet the treatment is gaining popularity because doctors are constantly learning safer methods to administer the drug.

Also, doctors are becoming more confident in prescribing steroids because studies on their use in chronic childhood epilepsies including Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and MAE have shown that long-term steroid therapy is actually safer than previously perceived.

The steroids themselves come from two different families: ACTH (Andrenocorticotrophic Hormone) and oral steroids such as prednisone or prednisolone.

Andrenocorticotrophic Hormone –ACTH

ACTH is a first-line treatment for infantile spasms and can be used in other childhood epilepsies including Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and MAE.

It’s a peptide hormone, produced in the anterior pituitary gland that is administered by injection.

Unfortunately, this therapy while thought of as a “magic bullet” by some, has caused fatalities and serious complications in the past.

So it’s regarded as a high-risk treatment and used only when it is judged that the benefits (seizure control) outweigh the risks.

Oral Steroids (prednisone or prednisolone)

Hydrocortisones such as Prednisilone and Prednisone are a synthetic type of medicine known as corticosteroids.  (Corticosteroids are hormones produced naturally by the adrenal glands located adjacent to the kidneys which have many important functions on every organ system.)

These synthetic corticosteroids mimic the action of cortisol (hydrocortisone), the naturally occurring corticosteroid.

And because of the high risks associated with ACTH, specialists often opt for prednisone or prednisolone, because they’re considered to be much safer.

Specialists have had decades of experience with this type of medicine — especially in the management of chronic asthma in pediatric patients, and they’ve learned methods of oral administration which can minimize side-effects significantly.

The distinction between prednisone and prednisolone is that prednisone is inactive in the body and, in order to be effective, it first must be converted to prednisolone by enzymes in the liver.

Some specialists favor the use of prednisolone because it can be just as effective as prednisone but may have fewer or less side-effects.

Potential Side-Effects

Because steroids are hormones, patients who use them for long periods of time must be carefully monitored.

The most common side-effects are: weight gain, thinning skin, upset stomach, muscle weakness in the thighs, shoulders, and neck; “masking” or hiding a fever, mood swings, insomnia, pneumonia, and increased blood sugar levels (especially in patients with diabetes).

Steroids can also interact with some seizure medications, either raising or lowering the seizure medicine levels in the blood, which can alter their effectiveness. Your doctor can explain other side- effects that may occur with steroid use.

Replacing anticonvulsants is not merely an end in itself. Although they give many people with epilepsy a better quality of life, they do not affect the course of the disease, only its symptoms.

Researchers hope that anti-inflammatories may help understand epilepsy’s underlying causes.

“Giving a medication that could treat the epilepsy, as opposed to treating the seizure, would be absolutely novel,” Dr. French said.

“Like any new field, there’s a lot of enthusiasm and almost a bit of religion involved,” said Dr. Tallie Z. Baram, an epilepsy expert at the University of California, Irvine.

“The challenge for the next few years is to find out the limitations, the boundaries, the real mechanisms.”


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  1. Does this mean me


    Comment by michele metzger — December 5, 2016 @ 11:17 AM

  2. Not unless you use steroid therapy.


    Comment by Phylis Feiner Johnson — December 5, 2016 @ 11:24 AM

  3. Thank you so much for this information !


    Comment by Bonnie Sutherland — December 5, 2016 @ 12:54 PM

  4. Glad I could be of help, Bonnie.


    Comment by Phylis Feiner Johnson — December 5, 2016 @ 1:06 PM

  5. have you ever heard of vimpat dose anyone know of anything I can take other then the vimpat because it cost 100.00 every month I don’t have that kind of money if i cant find a new pill to take i will have to stop takeing it thank you susan


    Comment by pooterbear — April 6, 2017 @ 10:53 AM

    • Pooterbear, here are some links for discounted drugs:

      RxSavingsPlus A free drug/prescription discount card, to help lower the price for medication. It can be used at CVS Pharmacy, Target, Rite Aid and 60,000 participating pharmacies nationwide.

      And it offers an average of 20% off the retail price of drugs. (Kind of skimpy, but one-stop shopping.) https://www.rxsavingsplus.com/

      There are other coupon offers out there like: Prescription Hope which offers over 1,500 brand name medications as prescribed by your doctor.

      There’s a $15 per prescription per month service fee. And a yearly enrollment fee of only $15 — no other medication cost and no hidden costs. http://www.prescriptionhope­.­com/­what-­we-­offer.­html

      GoodRx, can save you up to 70% (mostly on generics) with a free drug/prescription discount card, which can be used at CVS Pharmacy, Target, Rite Aid, Duane Reade, Kroger and 60,000 other participating pharmacies nationwide.

      No insurance is needed. There’s only one hitch, prices may vary by zip code. So check pharmacies around your area for the best deal. http://www.goodrx.com/

      Partnership for Prescription Assistance (PPA) The Partnership for Prescription Assistance (PPA) is a joint effort of American drug companies, medical organizations, and government agencies to inform patients about patient assistance programs.

      The PPA offers a toll-free helpline as well as an online application wizard and program information. The toll-free helpline is 1-888-477-2669 or look up https://www.pparx.org/

      PatientAssistance.com This is a free resource designed to help connect patients who cannot afford their prescription medications with patient assistance programs. http://www.patientassistance.com/

      rxassist.com A website with information, news, and a database that are all designed to help you find out about ways to get affordable, or free medications.

      The database includes information on the pharmaceutical companies’ patient assistance programs, or programs that provide free medication to low-income patients.

      RxAssist was created by Volunteers in Health Care, a national, nonprofit resource center for health care programs working with the uninsured. http://ww42.rxassist.com/

      SelectCare Benefits Network Over 1400 brand name and many generic medicines for a net cost of only $20 per month.

      By becoming a member of SelectCare Benefits Network, you will be assigned a Personal Care Advocate who will simplify the process of applying for Patient Assistance Programs and make it easy for you to get your medications for very little out-of-pocket cost. https://www.myrxadvocate.com/

      I hope this helps.


      Comment by Phylis Feiner Johnson — April 6, 2017 @ 12:18 PM

  6. thank you phylis I did not know any of that now I can use the info you send I am so very happy that I can email you if you ever need anything i will help you anyway i can your friend susan


    Comment by pooterbear — April 6, 2017 @ 12:31 PM

  7. Thanks Susan, that means a lot.


    Comment by Phylis Feiner Johnson — April 6, 2017 @ 1:06 PM

  8. I was on prednisone for years for Crohn disease. I have major bone lose and am losing my teeth and gums


    Comment by Susan wain — June 15, 2017 @ 8:49 AM

    • Have you changed your meds? That sounds horrible.

      When I was on Dilantin, I had galloping gum rot.

      The meds were changed, but the damage was already done.


      Comment by Phylis Feiner Johnson — June 15, 2017 @ 9:07 AM

  9. when I was on Dilantin I lost all of my teeth my doc that I was seeing at the time all he did was just changed the amount that I was takeing then I want to aother doc and he was the one that get me off of it and put me on aother med


    Comment by pooterbear — June 15, 2017 @ 11:00 AM

    • How stupid do you think the other doctor was?

      Well, you’re already living with the consequences.

      But at least now you have another doctor with different meds.


      Comment by Phylis Feiner Johnson — June 15, 2017 @ 12:57 PM

  10. Thanks for the article Phylis — good to know about this. I don’t normally use steroids but I do get sinus infections fairly often and, when they get bad enough I give up and head to my primary care doctor. That usually leads to antibiotics, frequently a shot in the hip (I think it’s a steroid), plus a course of steroids for the swelling in my nasal passages. It’s really about the only treatment that works….until the next time.


    Comment by Ellen LaFrancis — October 11, 2017 @ 4:48 PM

  11. I have never read about prednisone for epilepsy, however, I was on this dangerous steroid for Crohn disease. I was diagnosed with Crohn disease at 13 yrs and there were more side effects than benefits. The worst for me was the swelling and weight gain, osteoporosis, bone and gum loss that is causing me to lose my teeth 35 YRS later. I am thankful that I am in remission from Crohn and am not on prednisone for seizures. What source recommended prednisone for epilepsy


    Comment by Sue wain — December 1, 2017 @ 9:23 AM

  12. Great help, thanks.


    Comment by Riaan — December 11, 2017 @ 3:31 AM

  13. I’ve got complex PTSD and neads, only diagnosed recently after living for 40 yrs on a wrong diagnosis of uncontrolled epilepsy, one clue that led to this new diagnosis is that my hippocampus is scarred and shrunken, caused by cortisol released in high amounts during childhood development. van der Kolk’s book, the D Body Keeps the Score, describes it well


    Comment by Gail — February 25, 2018 @ 5:25 AM

    • Oh you poor thing. PTSD and NEADS.

      What caused the high cortisol release in your childhood?

      And how did they finally discover it after 40 years?


      Comment by Phylis Feiner Johnson — February 25, 2018 @ 10:33 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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