Behcet's Syndrome Society
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Advice please!

I was diagnosed with BD about 2 years ago after having the flu which caused a very severe flare up which left me in hospital for a week on morphine. I was told it may be herpes (which I was actually happy about as I knew there were treatments for this and was very common) however, after many tests they confirmed it was not. I finally got diagnosed with BD and was put on colchicine which did help after a while. However, my GP told me that colchicine was tested on animals and causes birth deficiencies so I instantly stopped taking it as there was a chance I could get pregnant. As I had to wait 4 months for an appt with my consultant, I was given an inhaler called Clenil Modulite which is absolutely brilliant when sprayed directly on ulcers (anywhere on body but I used mainly for mouth and vagina) it gets rid of them within a day or so. I finally had my appt with consultant last week and they want to put me on Azathioprine as this is apparently 'safe' if I was to get pregnant in the future. But after reading online reviews and side effects it seems like it is actually quite dangerous? Does anyone have any feedback for this medicine having taken it before or have any advice as to how to manage it? Thank you!

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Hi, I’m recently diagnosed. I was put on colchicine which really helped the oral ulcers and other symptoms. I read it could be repro toxic so asked about this with my rheumatologist as I did not have any form of contraception at the time. He was fairly relaxed and said to come off colchicine if you become pregnant. However other things I have read about colchicine state a woman of child bearing age should have contraception & should come off the drug 3 months before ttc. After my first appointment at the COE they are thinking about placing me on azathioprine. So search the posts in this BSS group for more info, it is a low dose chemotherapy drug. Hope this helps, best wishes

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Thank you!!

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Hi. I’ve taken both colchicine and azathioprine. Azathioprine cut my immune system down to a level that I was getting serious infections even though taking precautions. I have kids and can’t isolate myself from them. That said every medication works differently for everyone. I recently had to stop Otezla due to severe diarrhea, dehydration and migraine . Azathioprine did help me a lot while I could take it.

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Thanks for the reply, I heard that you should only be on Azathioprine for a maximum of 2 years so I think I will research other long term medicines (if there are any) as 2 years isn't enough!

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I assume that you are still taking the azathioprine at the moment?

It might be a good idea to stay on it at the moment to see how it works for you and use contraception until your system is settled or until you can discuss organising medication programme that works for Behcets sufferers who want to get pregnant and during pregnancy.

You may also find you need to take extra supplements , avoid the steroids and make changes in your diet and lifestyle before and during pregnancy that can prevent your Behcets causing complications or extra flare ups while you are pregnant.

They will probably be able to advice you about appropriate steroids for the future that haven't been tested on animals.

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Thank you, very helpful. I haven't actually started taking Azathioprine yet but I have a prescription. I've never been too keen to take steroids and as you said, I defiantly need to make changes to my diet and lifestyle going forward. Really appreciate your advice.

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Glad to help.

I hope you do try the prescribed medication as well as making lifestyle changes, I am still waiting for my diagnosis but have been suffering with the symptoms and flare ups for 11 years, I have made many lifestyle changes along the way but know that there is no way I can get back to something close to normal now until I get some form of medication.

I never used to like taking medicines but I have had to put aside many principles I could keep when I was in good health and accept the fact that some things I would prefer not to do had to change in order to stop my condition getting worse or causing any more damage.

It is definitely worth making the big lifestyle changes and getting to a good maintenance level and getting advice from your consultants on what to do in preparation for pregnancy before putting your plans into action, and as another member said you should be able to have a flare free , steroid free pregnancy.

Good luck and let us all know when you eventually get the good news.

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I have taken Colchicine for 20yrs and only stopped Colchicine when I became pregnant. I take 2 tablets every day and sometime reduce to 1 tablet or none for a week or more if I'm feeling well. Symptoms always return and I have to start taking again.

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Good to know that you were able to stop taking before pregnancy. Did you find your flare ups were worse when pregnant? This is something I am quite worried about! Thanks.

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No I was much better during pregnancy, no vaginal ulcers at all!

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Good to hear!!

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