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Frequently Asked Questions 

Question:

 I am about to start IV steroids. Do you have any helpful tips or advice?

 

Answer:

IV Steroids/IV Solumedrol is the first treatment for Autoimmune Encephalitis. Usually a course of 3-5 days 1 gram is given. It acts as a global anti-inflammatory, so it brings down brain swelling and also suppresses the immune system. 

The RNs at infusion centers are very kind and helpful people. They give this treatment frequently for other illnesses. Usually they are used to having it at a fast drip. AE Warriors often get BAD headaches as a side effect if the drip is too fast. So, ask the RN if they will make it a ‘slow drip’ of @ 1 hour 45 minutes to 2 hours. AE warriors report not getting the BAD headache when this is done.

 

1.  Drink, Drink, Drink. Sadly, caffeine does not help so coffee lovers, you are out of luck as caffeine can dehydrate. Start drinking water the day before, the day of and the day after your scheduled treatment. Parents: jell-o and pop cycles do count! So, load up.

 

2.  Metallic taste: Solumedrol can cause a really yucky, penny-like taste in the mouth. We recommend sucking on hard candies or mints during the infusion. Jolly Ranchers and LifeSaver Mints are quite effective.

 

 

3.  Protect your stomach: Solumedrol can increase stomach acid production resulting in severe heartburn and gastritis. To reduce nausea, your doctor will prescribe an anti-nausea medication, often Zantac, as a precautionary measure to be taken before each meal and each infusion. Eat small, frequent meals.

 

4.  The cookie monster: Steroids will make you hungry!! Be careful what you eat. Solumedrol causes water retention, so avoid salty and sugary foods. It can also increase blood sugar levels while it depletes potassium levels. Increase potassium-rich foods, such as bananas, apricots, lima beans, beets, and baked potato with the skin. If you have diabetes, you will need to closely monitor your blood sugar levels.

 

5.   Anxiety: Many AE Warriors report feeling a surge of energy, so much so that laundry gets done, the house gets cleaned, etc. Be careful. The steroids are putting a huge strain on your body and you need to rest and recuperate. It’s tempting to be an Energizer Bunny for a few days, but you’ll just end up paying for it later. Some patients will experience severe fatigue instead. Listen to your body and try to take it easy.

 

6.   Insomnia: Is a side effect. This can affect you more as the treatment proceeds. It is best to not turn on the television, computer or music because those activities will stimulate you further. Rest is a dark room and avoid stimulation to try your best to sleep.

 

7.    Mood swings: Mood swings and increased irritability are very common side effects. AE Warriors know this as ‘Roid Rage’. Family and friends should be clued in that a lot of patience and gentle understanding is needed while the AE warrior is temporarily not in control of their emotions. This is a time to avoid confrontation.

 

8.   Depression: Corticosteroids may aggravate existing emotional instability or psychotic tendencies. If you suffer from depression, keep a close eye on your mood. Knowing in advance that your depression might become exaggerated helps tremendously when you feel the tug of that dark hole. Reassure yourself that it’s just a temporary condition and will soon pass.

 

9.   Weakened immunity: Solumedrol is a powerful immunosuppressant and your body will be vulnerable to infection during and after treatment. Avoid contact with people who are sick and absolutely do not receive any vaccinations without consulting your doctor. If you do begin to see signs of infection, such as increased fever, chills, rash, and respiratory distress, contact your doctor immediately. Use hand sanitizers. 

 

IAES is there in spirit. Supporting you each step of your AE journey.

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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