HI
All I can say is ALL OF THE ABOVE- My mind has been like that for four years, I have RA and Fibro and have taken both small and large doses of steroid for twenty years, partly because of asthma too.
I think the steroids used to make me high and happy and alert. Over the last twelve months, my symptoms have been just like you describe, I am definitely not safe driving some days, make very silly mistakes in everyday life and forget LOTS of stuff which I really have known for a long time
I would love to know whether it was the steroid or the disease
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Hi Lisa,
To this day, I'm not sure if I had steroid brain fog or chemo brain fog
. It lasted maybe 3 weeks - gradually weakening each week. First week, I was afraid to drive myself, too. I simply wasn't myself.
Back in June and July, I was in a hospital where both Rituxan and steroid (most likely Decadron) were given to me for the very first time in high doses by intravenous (IV) infusions. Not sure though how much exactly dripped into my bloodstream. I would have to check my records in hospital. I'm due back in mid-December after 6 months.
Steroids are something I'm trying to avoid since I was diagnosed with RA, but sometimes I don't have any other options. I agree with you that they are nasty, but they produce the quickest way to reduce flare and bad inflammation. I was told that steroids had to be given with Rituxan to avoid severe allergy reaction. I understand that it was for my own safety, but I don't like them and their side effects. I had a small "reward" the day after which I call "one-day wonder"!!! It felt really wonderful like before RA days. Funny, I thought for a moment that I was cured.
After 2nd infusion, I was ready for that "special day." I did 4 loads of laundry, hahaha. I'm already planning for two "special days" next month. I need to put up my Christmas tree and holiday decorations.
Anyway, I worked very hard to flush steroids out of my system. I drank lots of water and at that time I was not heavy water drinker. I know it sounds crazy, but when you have a bad water retention, drinking MORE water helps to battle it. Instinctally, I ate lots of peaches, nectarines, and watermelons. I was happy it was summer. I still remember my puffy eyes, hands, ankles, and very swollen face ("moon face"). Physically, I was very weak and had a strange feeling like something was crawling inside my head. I'm good with meds and can take almost anything, but if they mess up with my eyes or head, I'm against them. Gosh, I thought it was too late and from now on I will be leaving with that sensation in my head. After 2-3 days it stopped
. I asked my rheumy if anyone else reported this phenomenon and he said "no"...weird, but not surprised...After all, RAers do respond differently to their meds. Emotionally, it was like a hormonal roller-coaster. One day, I was needy, clingy, but another day, I would say don't touch me, don't talk to me, leave me alone. I'll see how it goes next month. This time, I should be more ready and know what to expect.
I hope you'll feel better soon.
I kept saying to myself - "this is not me...it is just steroid...it will pass" because eventually it will once its job is done! You will become yourself again.
Keep us posted.
Ili