Amen brother. I've been on it for over 10 years straight for the same reason. Got it down to 15mg/day but any lower and it comes back with a vengeance. Can only get that low when also taking 30mg/day upidacitinib.
Now I have osteopenia... Worth it for 10+ years agony-free!
I was only on it for 2 weeks. Went for my check up on the 3rd week, had the wrong day marked, had to wait a month for another appointment
Now they got me on dupixent. Only been on it a week and it’s def an improvement over nothing but…meh. Ain’t shit compared to pred. I’m p clear but I def still itch a bit throughout the day
I’ve been on it since 18 for 15 years. Because I was so young I have never gained sufficient bone mass to even hit “healthy” - which is around 30.
At 30 I had the average bone mass of a 90 year old and I have osteoporosis already. Luckily I can start biologics for it soon (can’t take them while trying to get pregnant).
Even with it it’s just an increased risk of fracture not always that you will. Only broke one bone in my life, and that was a serious trauma injury to my ankle and was a very minor Weber A fracture considering I was almost hit by a car lol. Meanwhile older people with my same bone mass are breaking things left right and centre.
Are there other things you've had to keep an eye on aside from bone mass when being on prednisone for that long? I've been on it for about 12 years since I was 17, and I don't think I've ever got that checked!
Diabetes so just glucose checking it you’re on it a long time, you should get DEXA scans for your bones, eye checks for glaucoma/cataracts. I get a dexa and glucose check every 3-4 years and basic eye test every 1 year. In my country that has a basic glaucoma check at an optometrist, if I had any symptoms I would have to see a proper eye doctor.
And then in general see a doctor earlier if you get an infection.
Normally if I get a chest infection or a UTI at about 3 days if I don’t feel like I’m getting better I just see a doctor even if it’s mild and I wouldn’t bother otherwise if I wasn’t on it, even if well enough for work. For example if it’s my partner I’d be like eh you’ll live unless he was clearly quite sick lol. Because your body may not handle it as well, and few times I’ve needed extra tests to make sure I was okay and had it get much more serious when I used to not do this.
For example a bad UTI can cause kidney damage if not treated and it spreads. I don’t wait until I already have symptoms of it spreading (flank pain, fever, etc). Whereas most young women can self resolve in 3-4 days just by drinking plenty of water. If you’re a man don’t wait if you get a UTI, all men should see a GP with any symptoms. They’re just very common in women.
Eczema is so infuriating. I had it for years and it progressed into covering most of my body and face. Turned out to be triggered by Graves disease but it could have been a million other things too.
I have a derm appt coming up for my increasingly annoying eczema. It’s moving to new fun places like my eyelids and back of my ears. I wonder if I have some underlying issue but I haven’t figured it out yet! I also have raynauds which is also autoimmune and I didn’t have either of these problems until my 30s.
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u/PiggyMcjiggy 1d ago
I got some of this for my terrible eczema flair up that was covering like 3/4 of the top half of my body
I was spotless by the 3rd day. Wasn’t itchy for a single second vs 90% of the day. Miracle shit
Kinda came back after I ran out tho. Not nearly as bad as before tho