What could be next?: Hey there everyone! I have... - Behçet's UK

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What could be next?

m82girlygirl profile image
6 Replies

Hey there everyone! I have been on azothiprine for a few months now. 50mg at first it semmed very promising. Then I had an oral lession breakout which was still mild compared to before and slower to take over my mouth and throat like before. So we bumped it up to 100mg (pharmacist says that should be the max dose for my weight) and low & behold right before my mensus and after my husband lost his job and started a new one & I forgot ONE dose I started to get am ulcer in my mouth. It is slower going again but definitely isn't gping to go away unless I start prednisone again (which I am SUPER sensitive too)

I'm just wondering if any other women have had a correlation to their menstrual cycles and if any kind of hormone therapy was started rather than going to a heavier immunosuppressive drug??

Thanks for amy responses. I hope everyone is well!

Maria

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billi profile image
billi

Hi this is just my oplnlonit could be your periods but also stress is a big factor. Something a lot of us use is CLENIL inhaler used by asthmatics. A couple of puffs in the mouth, or nose or vagina and anal. I the mouth puff onto the ulcers, close mouth and swill, then blow out do not swallow. Do this upto 4/5 times a day at the onset gradually reducing as things improve. Works really well if used at the onset of a flare up.

Hope this helps

Billi

2106 profile image
2106

Hi I stopped using all toothpaste which wasn't natural, I use Aloe Vera Forever Bright and the ulcers were my biggest problem. Try any natural product of toothpaste may help. Also mouth wash is a no no for me as this just makes my mouth sore. Have a go it may help but you have nothing to loose if it doesn't. I also use Merc Sol 30c which you can get from a homeopathy store or health shop for my ulcers.

All the best

Biddy

Kiwichris profile image
Kiwichris

I definitely have flares that correspond with my cycle but not had any hormone related drugs for this. Just always feel really crap the week before my period. Fatigue is worse, body aches/pain is worse as is skin and sometimes mouth flare. Hope you get sorted

magirose profile image
magirose

I don't get a lot of ulceration but definitely found that flares were brought on by menstruation. I don't know what to suggest you do about this except to say that effective disease control is the only way to get better control of your symptoms and that may mean changing meds. I wish I could suggest something more positive for you but sadly this is the experience I had. I have now stopped having periods. Am glad of that!

Jenn_USA profile image
Jenn_USA

My oral ulcers generally start within 2-3 days of the end of the bleeding part of my cycle. I started a low dose of Colchicine about 6 weeks ago after one crop of ulcers went away. I successfully made it through one cycle without ulcers and another week or so will tell me if it's really helping if I make it through another. Although I didn't get the ulcers I still had soreness in those areas like they could come at any moment, but they didn't. I was also prescribed a topical dental steroid paste, Triamcinolone, that I can paint onto the ulcers when they start forming. It helps tremendously at shortening their duration and severity. To add to other comments I switched to a sodium lauryl sulfate (SLS) free toothpaste a long time ago. It did help at first, but not sure that it makes a difference now but I continue to use SLS free toothpaste now.

m82girlygirl profile image
m82girlygirl

Thanks guys! I had switched to Biotene toothpaste before I got my diagnosis thinking it wad the sls causing the mouth ulcers, wouldn't that have been nice if thats all we had to do! This diseaae is baffling! Jenn_USA mine seems to be one week before my cycle should start. May I ask if you are on any contraceptives? My husband got a vasectomy so I could get off mine. Wouldn't that suck for him to have that done and now I have to get back on them!

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