Monday, March 2, 2015

My memory sucks... because of prednisone.

One of the hardest things to explain to people are the random long term side effects that come with the medications you're on all the time for a chronic illness.

One that has really affected me in my life is memory problems due to chronic prednisone treatment over the course of almost 30 years. This is a very rare side effect and generally only happens permanently when you are on a very high dose for a long period of time.

When I was 19, I was diagnosed and then went back to college, away from doctors and family. The doctor there was unfamiliar with Crohns and the treatment I should be receiving. I was on a very high dose of prednisone for a very long period of time (at least 6 months straight ranging from 40-80 mg daily). At my highest dose, 80mg for 3 months STRAIGHT. This was the time in which I gained 120 pounds in 3 months. But it also had side effects that I still have to this day - and I am now 37. Some people experience short term memory loss when on short bursts of prednisone but, those symptoms subside or even go away after they go off the drug. Because of the extent of time I was on the drug, and the extreme dose - this is a symptom I still have. I've seen a lot of studies about the effect of prednisone and memory loss (including one where it showed that it was caused by actual brain damage - yikes) and have seen studies like below which give me some form of validation as one doctor once told me - it's in your head:

Time on Prednisone when people have Short-term memory loss:
< 1 month1 - 6 months6 - 12 months1 - 2 years2 - 5 years5 - 10 years10+ years
Short-term memory loss25.44%30.70%4.39%7.89%14.91%8.77%7.89%

Severity of Short-term memory loss when taking Prednisone:

leastmoderateseveremost severe
Short-term memory loss10.71%57.14%28.57%3.57%

How people recovered from Short-term memory loss:

while on the drugafter off the drugnot yet
Short-term memory loss0.00%0.00%100.00%

I hate having a crappy memory. I remember a fair bit of stuff but there is a lot I forget. I KNOW it makes me seem to people that I must just not care about what they tell me, or that I wasn't listening. I have to write down a lot of what I need to remember, even the small things. If I don't write it down, there is a fairly good chance I won't remember it. I am sure this paints me in a bad light for people who don't know me well. And I am sure the people in my life who do know me well, think I just don't listen/don't care.

The other annoying thing about it comes with the people who know this about me. So, I get a lot of "Well, you don't remember this right because your memory sucks." - I do not forget everything and it doesn't change my memory to something different. It's a very frustrating thing for me. I want to remember things, especially things that are important to my family/friends. And NO, I do not forget everything!

I want to remember important dates. I want to remember that I said I'd bring the kids for a playdate with you on Tuesday, or have lunch with you a week from Friday. But, I don't always remember these things. Please know: it's not because I don't care/don't want to see you/etc. And when I do remember too late, I feel like a colossal ass. And a lot of the time I don't know how to even approach the subject with you. So, please... be kind and understanding of me and my crappy memory. It's just another unfortunate effect of living with a chronic illness. And maybe send me a reminder of something we scheduled - a simple are we still on for tomorrow will make a world of difference :)

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