Infusion

[Cool_blue]

Tomorrow I am starting an prednisone infusion. I currently have a genital ulcer and am taking dapsone and colchicine and azathioprine. Any advice?

[Lucets]

I’m currently on the pill and it works for me. Definitely alleviates some of the symptoms and cleared genital ulcers I had. The tricky part is coming off of prednisone. Anytime I try to come off I get another bad flare. So I’m stuck on 10-20 mgs at any time (and it’s not something you want to stay on). Also makes me hungry but it’s a good thing for me bc I’m underweight.

[Legomum]

Steroids usually make a huge difference in Behçet’s as they get on top of the inflammation of the blood vessels which causes the main symptoms.

But do ask and read about the side effects so you can understand changes that may happen and forewarn those around you. For me a high dose affects my sleep and makes me a bit “hyper” and happy with energy that I could run a marathon, or at least start cleaning the house from top to bottom at 2am!! For other people their mood dips. Steroid can increase appetite so beware what you eat . Being free of the ulcers will be amazing and you then have to pace yourself a bit and not overdo it. Maybe keep a diary for the next week or so then you can be objective about the improvements in your Behçet’s and see how you feel and what activity you do.

Reducing and stopping steroids can be hard. I used to respond well to a “short Sharp burst” of prednisolone and taper back down ok (in my 20s) But now my ulcers seem to reappear at higher doses and I feel a bit stuck at 8mg, slowly trying to get back down to my usual 5mg oral prednisolone maintenance dose (now aged over 40 and been on daily prednisolone since 26)

Don’t want to put you off the wonder drug, just to be informed!

[Expectthebest]

Easy infusion. Will it be once a day for 3 consecutive days?

[Cool_blue in reply to Expectthebest]

Yes