What meds are you on?: I came off any medication... - Behçet's UK

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What meds are you on?

Lojo12316 profile image
7 Replies

I came off any medication to have my children. After my last my flare ups were constant so I have been back on azathioprine for nearly 1 year but I have just had 2 small flare ups of vaginally ulcers and loads of boils. What other medications have people been put on to help inflammation. I would really like to stay clear of steroids. My specialist is overly but a bit old school but seems to listen to my wants.

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Lojo12316
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7 Replies
Hergel profile image
Hergel

Colchicine and Prednisolone works for me

JimParslow profile image
JimParslow

I am just on Colchicine for the inflamation, and on a triple mouth wash for the ulcers, only take both when I feel the need.

2106 profile image
2106

I am at present on no medication. I have times when I feel yuk have no energy joint pain so many things to list. I take manuka honey morning and evening this helps with my inflammation of joints, also use coconut oil, I take vitamin D supplement for my bone pain, I never use soap put lavender oil in my bath, use coconut oil as well, very soothing, use organic shampoo as normal shampoo used to irritate my skin then I would end up with ulcers under my chest on my arms and legs which would take months to heal, I use aloe vera forever bright toothpaste and I haven't had ulcers for the last 2 years, also Merc Sol 30c which is a homeopathy remedy for ulcers and these help the vaginal ulcer scaring which I have still got from when I have a really bad flare up a few years ago. My consultant told me that it takes about 5 plus years for vaginal ulcers to completely heal as mine were so concave, these have healed much quicker that that. The Merc Sol has helped them to heal more quickly. I also don't drink coffee, alcohol irritates my tummy so does milk. I have had Behcet's for the last 40 year's and I have found that eating organic food taking as few as possible medicine's I can cope better. This may not work for everyone but you could try one thing and see if that helps. All the best

Jenn_USA profile image
Jenn_USA

My flares increased significantly starting about 5-6 months post partum. I've only recently started Colchicine so I don't have a lot of input on it yet, but I have triamcinolone paste (its a topical dental steroid paste) to dab onto oral ulcers when they break through. The paste has been a tremendous help to me in keeping them from getting out of hand. Although it's a steroid its topical and I only end up using it a few days about every 6-8 weeks.

Lojo12316 profile image
Lojo12316

Is colchicine a steroid ? Topical or oral ? I was put through oral health but had no joy at getting any oral steroids that worked then they signed me off and said they couldn't help any more. I think I'll be trying more alternatives. I have in the past. Perhaps more anti inflammatory.

m82girlygirl profile image
m82girlygirl in reply toLojo12316

No colchicine is not a steriod. They had a steriod cream/paste they put on the ulcers

m82girlygirl profile image
m82girlygirl

I am currently on azathioprine 100mg. I started at 50 we moved up to 100 because I was having flares of mouth ulcers that were not "spreading" as rapidly as before. It is working well I have been ulcer free for 2weeks now (huge deal for me!) and I had an ulcer appear and heal on its own! !

I tried colchicine for 9-10 weeks before I changed doctors. The colchicine was a complete fail for me. It didn't help anything and I was having diarrhea that was interrupting daily life! I pooped my pants in public, that was the last straw!

When I had a flare I would wait until it was unbearable and I would get on prednisone to stop it while continuing other meds. I would take 20mg for 10 days then 10 mg for 10 days then 5 mg for 3. There is really no set dose each person is different my doctor says to keep the steriod use to a minimum dosage as possible but that also works.

I hope that helps you.

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