PSA for the Auto Immune Hepatitis Crowd

This one if for my AIH buddies. Everyone else looking for a slightly entertaining post please hum quietly to yourself and this will be over in a minute.

If you’ve started taking Imuran (azathioprine) and your noticing a LOT of hair in the shower, take heart. Mine has finally stopped falling out. This took about six months from when it first started.

I’m writing this because when I was feeling most panicked I couldn’t find any solid answers about how long this was going to happen. I started taking Imuran about a year ago but I was taking it with Prednisone so I guess that delayed the whole hair loss side effect and I forgot about it. I tapered off the prednisone over the spring and summer and was off it by August. In the last weeks of the taper I started noticing hair loss but didn’t think much of it because:

1. I have a lot of hair

2. I normally have a hormonal hair shed similar to what you get after a pregnancy every couple of years that lasts about 2 months

So I went on about my business but when October rolled around and I was still loosing hair I began to worry. In fact it seemed like I was loosing more hair per day that any hormonal shed had ever caused. That’s when I hit the Internet and remembered that hair loss is a side effect of Imuran. They called it “temporary” but I’d been on it for almost a year so that seemed strange. No one gave any time frames to give “Temporary” any context.

By November, I would estimate that I probably had lost half my hair. That sounds extreme but remember I said I have lots and lots of hair. The estimation comes from the thickness of my ponytail and how many times I have to wrap the rubber band. So if you looked at me, you’d just think that I now had a “normal” amount of hair. The loss itself wasn’t bothering me because I had hair to spare but what I worried over was where it was going to end.  I could find no answers.

The one thing I did find in November was some one saying that drinking Ensure seemed to help. So I bought some and while I have no scientific evidence, I do believe it did help.  Here’s why – completely unrelated I have a damaged toenail that hadn’t been growing out at my normal rate, when I started drinking the Ensure, my nails started growing out faster (the damaged spot let me see just how fast) so it was doing something. It seemed like at the same time I had less hair in the shower floor and in my brush each day. I drank the shakes each day but over Christmas I got busy and just kind of forgot about them.

It is now January and while my hair is still thin by my standards, I will say that the excessive hair loss has stopped. My brush and shower floor only have the normal amount of strands and I now seem to have quite a few fuzzy edges which indicates new hair growth. With my luck it will all be grey.

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