Probable Behcets - treatment to start

Hi,

Was told by my Dermatologist that I probably have Behcet's so have to start colchicine tomorrow. I will be taking 1 per day for the first week, 2 in the second and 3 in the third in the hope that the 3 will not cause me any problems as there seems to be a number of side-effects with this medication. It's only taken a few months for me to be (almost) diagnosed with this but I had to go through a terrible time to get here.

I went to my GP because I had a large growth on my vulva. She referred me to a gynaecologist who examined me and said it would have to be removed. I went into hospital for surgery 4 weeks later where they removed the growth and took some skin from my groin for biopsy. The doctor was concerned that it may have been vulval cancer but the biopsy was clear (thankfully) and I had to take 5 weeks off work as I was unable to sit and had to wash the area constantly and could only dry it with a hairdrier due to the stitches.

Obviously I was relieved when the biopsy didn't show any cancers but I was also angry that instead of taking a part of it for biopsy, they went to the extremes and performed surgery.

The gynae didn't know what else to do after that so I was passed to a dermatologist who I have now seen three times in the last 2 months. I've had bloods taken to rule out other illnesses/diseases and he is almost sure it's Behcets I have due to the symptoms (genital and mouth ulcers, skin lesions and the biopsy showing vascullitis). The first time he mentioned Behcets to me, I went home and googled it and couldn't believe what I was reading. A lot of the symptoms were the same as mine but the problem was that I never presented them all at the same time.

I am now looking forward to feeling a bit better 'down-below' as it's been a blinkin' nightmare but I'm hopeful that I'll get some relief soon and the colchicine won't cause me any problems. Has anyone else been on this and what was your experience with it?

Thanks for taking the time to read this :-)

6 Replies

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  • Hi Moflo,

    I think you will find a lot of us have been on this medication. In Australia it is not a first line drug, we use methotrexate. I have taken it for some time and found 2 tabs were ok but 3 brought on side effects but after a while I was able to go up to 3.

    Good luck with starting the medication and check back here with further questions as many have a lot of experience.

    Felicity

  • Hello Moflo,

    I hope you get your diagnosis soon, because then your medics can start treating you properly.

    We all have had different experiences with different drugs. Sadly, the treatment for BD is as individual as each patient's symptoms.

    You will find TAGS on this blog page. I would suggest you take a look at the MEDICATION tag, but do not be frightened by all you read. Unfortunately some of us have had really bad reactions to some of the drugs, but I believe the majority of us are pootleing along just fine after we have found (by trial and error) what works best for us.

    Do not be too alarmed by what you read about BD on-line. Some of the stories are very extreme, and it must be said that unfortunately, some people have very sad histories.

    Now you have found this site, you will realise that the majority of us are normal, funny and empathetic sufferers.

    I hope you are much more comfortable 'down below'. You have had a real trial already, so I hope you have an easier time from now on.

    All the very best, Suzanne xx

  • Excellent advice and comments above. I would like to add that I also hope you get a confirmed diagnosis soon and that you find things easier to manage.

    Regarding online information, again as above I think it important to reiterate be careful what you read and how you interpret it. I don't know if you've read and of the factsheets available from the Society - they are from a reliable source and contain factual and useful information, from diagnositic criteria to ulcer rememdies.

  • or remedies even! :)

  • My daughter presented with a vulva ulcer so big she had to be hospitalized due to the pain. She has tried colchicine but could not tolerate due to extreme debilitating dizziness. After two years of mouth and genital ulcers, skin eruptions around her buttocks, and lots of homework and specialist appointments, she is now on a medication regimune that is working great! She takes one minocin and two plaquenil daily, and uses clobetesol cream for vulva swelling, which is the warning sign for her. She has had only one mouth ulcer (for which she took prednisone x 3 days that worked) in the past 6 months and feels great! Sounds like you caught it early. Remember lots of sleep, low stress and healthy nutrition and you'll be good to go"

  • Thanks everyone for taking the time to reply.

    Have been to collect my prescription this evening so will start everything tomorrow.

    Has anyone used instillagel? I've been given this to apply when the genital area gets too sore so that it numbs it. Sounds like heaven lol

    As well as the Instillagel and Colchicine, I've been prescribed Nerisone forte to apply to the skin down below and the groin area. Also, Rosiced for rosacia.

    Any advice is greatly appreciated

    Thanks

    Maureen

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