Prednisone/lesions/General treatments

[Number4]

I’d like to hear my responses regarding prednisone. I’ve been on it since July of ‘17. It started before my diagnosis, treating serious lesions in my throat. Went from 20 to 30 mg last summer when I “over-walked” and my low back reacted as if had tried to pick up a very heavy object from the floor. Before I could drop back down to 20 mg another non issue back movement became an issue. For 9 or 10 months I’ve been at 30mg. “Little Me” also has several lesions that brings inflammation where skin is loose in addition to the general problems of genital lesions. They started approximately a year ago.

Does this sound like s long time for lesions? (I’ve also developed oral lesions again.).

And has any else spent this much time on prednisone?

Currently on sick leave due to lesions, the inability to treat for pain while working and fatigue.

Using CycloSPORINE Oral followed by Halobetasol Propionate 2x daily for the genital lesions. At least they rarely bleed these days.

Also, my acne has gotten worse than it ever was as s teen. My face looks like an overweight meth head. Derm says it part of the disease process.

I’d appreciate any thoughts on my situation as well as successes in your own problems.

What does “ break through pain” mean? I think I’ve read that in comments.

Thanks.

[Legomum]

Far too long on pred. If this is not controlling your disease then ask your team what next treatment plan is. Are you under the care of the Behçet’s Centre of Excellence? Your Gp, Dentist or dermatologist could all refer you and it is free. They can consult the C of E for advice and had treatment paths on their website eg colchicine, inmunosuppressant and anti-TNF like infliximab. I was put on 60mg prednisolone when very unwell years ago, then down to 40mg quickly but then was a slow reduction and only really got down when Infliximab started working. I hated the steroids, the puffy face, weight gain and other side-effects like insomnia plus what pred does to your bones and skin. But the good news is that I did get back down to my maintenance 5mg dose and I returned to work after 6 months off sick. Good luck!!

[Legomum in reply to Legomum]

Also are you sure the “acne” is not Behçet’s skin lesions? Have a look st Joanne Zeis info and her book on Behçet’s for images of Behçet’s skin lesions and also look up erythema nodosum. There are some photos in this article too of a Behçet’s patient in Wales who is now a Trustee for the Behçet’s UK charity : google.co.uk/amp/s/www.wale...

[Number4 in reply to Legomum]

I’ll look into Joanne Zeus and the other stuff. Thank you.

[Number4 in reply to Legomum]

Thank you. I’m an American so I don’t have a C of E but I am on my third immune suppressant and my Colchicine dose has been doubled.

[Alex97]

In the past 18 months I have had flare ups of severe skin lesions/blisters including my eyes approx every 6 weeks-and with each flare they have treated me with Very high doses of intravenous prednisone, 5 doses of 1000 mg with every flare and I am also on a daily dose of between 30 - 60 mg, consultants are aware that I am having far too much but it is the only thing that will stop leisions spreading and I am very concerned over long term effects. They have just started me on a 6 month chemotherapy course that they are hoping will stop the flare ups and enable me to not have to take too many steroids but that does with its own side effects. Hate this disease ans what it and the drugs are doing to my body!!