my experience with prednisone
I have finally stopped my prednisone treatment that went way, way longer than intended and expected (6 months instead of 3 weeks). There's a lot you can find about it online and the most common side effects are always listed, but I wanted to talk about and document my own experience. It seems like everyone experiences some of the same issues with it, but then also develops things rarely talked about online that others don't experience at all. I found it definitely helps seeing at least one person experiencing the same weird stuff that you do or did, so I'm willing to share. There's a reason why people online call it the devil's tic tacs, but sadly, sometimes they're necessary and lifesaving.
I've definitely had the common issues with it - the extreme water retention and moon face, the resulting purple stretch marks, needing very little sleep and having a high amount of energy. I was super productive and wanted to go on walks constantly. On 60-40mg, I was extremely hungry almost constantly; even when my stomach was as full as it could be, the hunger wouldn't go away and it felt super urgent too, non-ignorable. I had muscle loss and difficulty rebuilding it, hand tremors and heart palpitations. I was also very irritable and quick to anger, and especially in the beginning, had extreme emotional rollercoasters and wanted to cry a lot.
It also, to this day, is still causing my hair to fall out a lot. Judging from the floor, the bed, my clothes, the drains and how much I had to pull hair from my hair brush as well as how it feels now to put my hair in braids or a pony tail, I'd say I have lost close to 50% of my hair. You wouldn't be able to tell by looking at me with my hair down because there are no bald spots and it isn't visibly too thin yet, but the volume in the braids and ponytail is definitely decreased.
But about the more rare ones or seldomly talked about effects: The moon face actually changed the alignment of my jaw and teeth, and made it uncomfortable to chew at times and made my jaw hurt. I've also had it mess with my hormones a lot. The 80mg I had intravenously at the hospital quick-started my period right there when it wasn't due. And for the rest of the treatment at 60-20mg, the periods remained early, weak, and short. Due to messing with my hormones, it seemed to also cause some sort of androgenization or hirsutism - I grew a lot of body hair in places that didn't have it before, and in the face (and nose!!) too. After a few weeks on it, it caused pretty severe chest acne (and I've never had acne before) and increased rate of my hair becoming greasy.
Due to the side effect of thinning skin, I've had issues with skin peeling, especially on the feet.
Mentally, it caused me a lot of brainfog after longer use (in the beginning, I actually felt like I could focus better) and after a few months on it, I stutter a bit, have trouble finding words, or forget where I was going mid-sentence. I talk more slowly and thinking feels harder, more sluggish, more intentional. Instead of thoughts flowing freely like a river, it feels like I have to squeeze the last bit out of the toothpaste tube. My memory itself seems to be pretty bad.
While tapering, especially below 20mg, I experienced bouts of kidney pain, extreme dizziness and days long headaches (which might have also been the Azathioprine, though). Below 10mg and especially after stopping completely (despite slow tapering below 5mg with 2mg tablets I could split into 1mg) I've again had headaches, nausea, extremely low appetite, dry eyes, bad sleep quality and wanting to sleep for 10+ hours, back acne (which I have never had before), and very stiff and hurting joints in my hands, my shoulders and my feet. I'm actually writing this on my fourth day of this stiff joints bullshit and I can barely walk and I have trouble holding cups and getting dressed, it's so bad. Despite tapering slow, it seems like my adrenal glands haven't fully woken up from their slumber yet and I'm likely having some kind of adrenal insufficiency.
It sucks a bit, because I took two weeks off from work to work on a university assignment and I had hoped to make considerable progress in that time, but now I neither get the assignment done or do something enjoyable. I would like it if my work on the assignment got delayed by me meeting people, going out to eat, traveling a bit, visiting museums or doing other cool activities at least, so it's worth it, but nah. I get to neither enjoy life or be productive. I should be used to it by now, since this year has been a lot of "lie in bed and wait for it to get better" with 1-2 weeks of feeling normal sprinkled in between, but it's still hard to bear. At least the assignment isn't due until end of September and I already have some of it done; and I planned this time off to grind it out with having in mind that any other week I might feel too sick again, so I guess it somewhat works as intended.
It's intense to type this all out and realize that despite all this, I was still better on it than off it until I found better longterm treatment. Living with these side effects at home was considered "functional" in every day life, because the alternative was uncontrolled bleeding in the hospital and being in too much pain to get up. This is what I went to the office with until I realized I couldn't deal with it and requested 100% WFH. In the eyes of others, I was taking medication and should be all good now, but it's easy to miss what else is going on and what new issues that medication is introducing.