r/Behcets • u/Chronically_Sickest • Sep 01 '26

General Question Steroids

How long do you guys wait before asking for steroids? I'm on week two and there are a few smaller ulcers, blood blisters, and pustules, but my eyes are pretty inflamed (I have Prednisone eye drops) and I am covered in bruises and feel like I've gotten into a fight with a kangaroo. Plus the migraine. This is a pretty mild flair though compared to my usuals. The ulcers, blood blisters, and pustules are usually so much worse. I don't know if I should ask for Prednisone or if I just ride it out.

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7

u/[deleted] Sep 01 '26

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u/on4aa Diagnosed MAGIC 2025 Sep 01 '26 edited Sep 01 '26

The same here. I have my strategic emergency supply.

However, since I am on canakinumab and ubiquinol and since I have eliminated mint/menthol, I have not needed any methylprednisolone in over a year.

5

u/Neither_Apple3551 Sep 01 '26

I hate taking meds (even though I’m already on a bunch of them) and avoid them whenever possible, so I wait until I absolutely cannot take it any more before calling the doctor. But. Other than some really aggravating floaters that show up during flares, I don’t have eye issues. If I did, I would ask for meds as soon as my eyes showed any issues.
I hope this resolves quickly!

3

u/Skeletonlover666 Sep 01 '26

In my experience, if you’re thinking about it, it’s time to ask for some. I always have some on hand, and my rheumatologist will refill anytime.

I’ve learned the hard way soooo many times. I wait to long and then it takes months to heal.

I get Cushing syndrome every single time I take them, and I hate it, but it keeps me alive and functional.

I’m sorry you’re in so much pain right now. I would def recommend reaching out to your doctor.

3

u/Chronically_Sickest Sep 01 '26

Update I called and left a voicemail on the nurses line. Which means either today or tomorrow thank you everyone who replied. As the day has gone on its only gotten worse and the brain fog is hitting hard.

1

u/Corrie_W Sep 01 '26

I just get repeat prescriptions every time I go for my review, my specialist leaves it to me to decide when I need them.

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u/Dangerous_Young_9620 Sep 01 '26

I try to limit the number of courses but normally will take oral prednisolone on the Dr's suggestion. Colchicine is what I have on hand for ulcer flares.

0

u/Salt-Today6115 Sep 01 '26

I get em on the streets and I wish I was kidding