Hey guys,
I am a 20yr old female from Australia.
Have just been diagnosed with bechets, and am on my second day of colchicine tablets!
I still don't know to much about the disease but day to day can be a struggle. Have had 3 severe outbreaks within 5 months all lasting up to a month, currently dealin with sever ulcers.. Its been a month now.
Hopefully these tablets help!
Sorry to hear about your new diagnosis but at least you now know you are not crazy!!! Just be patient, optimistic and persistent. You obviously have a decent doctor. I am on Gold Coast. Where R u? You will have good times and bad but an early diagnosis is a great thing. Good luck with your treatment.
I am in melbourne !
Im glad to have been diagnosed early, however its getting the medication dosage right now ! have to wait to see my specialist again in Jan.
Hi! So sorry to hear, but welcome to this community. I am from Sweden and got my diagnosis 2014 and this group have helped my so, so much. I was scared and felt alone.
There is a post from Jzeis about helpful links, if you look under "Posts" and here is one that I have been rearing a lot:
Behcet's Syndrome Society (UK)
I hope that Colchicine helps, it helped clear my ulcers a lot. I also was put on Imuren and Predisolon. After that I have only have had some minor episodes of ulcers.
There is hope and help. This community has many people who have hade Behcets for many years and can offer a lot of support.
Take care!
Hi, sorry to hear about your diagnosis! I was in a similar situation a few months ago (female age 22 with severe ulcer outbreaks) but going on colchicine really helped me! I haven't had an ulcer in over a month and I feel so much healthier! Hope it works the same for you x
Hello, and welcome to this site. I think Colchicine is the first go-to drug to be administered when Behcets has been confirmed. I think the consultants want to see how you get on, and if you need further help. Don't be surprised if the medics decide later to give you a cocktail of drugs when they find out exactly how you get on with colchicine, and if you need treatment for any other symptoms.
We all respond differently, to various drugs. What is good foe one of us is not necessarily good for someone else. I think we must be a nightmare to treat!!
You have had a quick succession of flares and must be feeling pretty awful at the moment. I hope colchicine helps you quickly. Good luck with your journey through the maze which is Behcets Disease. xx
Welcome Courtney! LillaMy mentioned my list of BD-related links -- I hope they help!
BEHCET'S RESOURCES FOR NEW MEMBERS
I've had Behcet's for 35+ years and have been helping other BDers since 1996 through online support groups, websites, books, and other resources. Here are some reliable sources of info for people in the US, UK and other countries:
American Behcet's Disease Association: behcets.com
Behcet's Syndrome Society (UK): behcets.org.uk
Table of Contents for latest book on Behcet's (winner of 2015 National Health Information Merit Award, Patient Education): bit.ly/1vgpeNM
(Available at amazon in Australia: amazon.com.au/Behcet%E2%80%... )
Behcet's Syndrome Society Fact Sheets for patients:
behcets.org.uk/information-...
Behcet's Syndrome Centres of Excellence (UK):
The Behcet's Treatment Center in the US (New York City) has become part of the Seligman Center for Advanced Therapeutics at 246 E 20th Street:
med.nyu.edu/medicine/rheuma...
Essential Behcet's -- a searchable blog (J Zeis):
Behcets Disease Books and Resources (J Zeis):
behcetsdisease.com and bdbooks.info
Find a vasculitis specialist (worldwide):
vasculitisfoundation.org/ma...
Find a rheumatologist (worldwide):
rheumatology.org/Directorie...
Find a uveitis specialist (worldwide):
uveitis.org/patients/list-o...
Uveitis.org patient education booklets/articles:
uveitis.org/patients/educat...
A list of Behcet's organizations (worldwide):
Hi and welcome to this site. I am in the UK and have suffered with BD for over 30 years now. Colchicine is a known and well used med for BD. I used it for 6 years non stop and within a few months my ulcers healed and whilst I was taking it I hardly had any ulcers and this continued when I stopped. Even now I only get a few mild flares . I do have other symptoms to contend with though. All the drugs we take have their side effects and don't all suit all the patients. I always say give any meds a try for at least a month by then the side effects lessen or dissipate and even if you still have them the question is which is preferable or better tolerate the disease or the side effects? We also all react differently with BD some have a mild illness, others have worse, we all react differently to the many meds and we all have difficulty with finding doctors etc who,actually know something about the disease. I suggest you look at........behcetssociety.co.uk Here you will find lots of information and advice.
I hope I've helped a little to calm your worries, life can be lived with BD ......just find a good doctor, take your meds, REST when you NEED to not just when you have to and keep positive and optimistic . there is research ongoing and believe me things have improved immensely since I first started my Behcets journey.
Hugs
Billi
Hello. Colchicine does help wit the ulcers but what I have found helped most (and what no-one seems to tell you about) is the changes to my diet!
My skin is less itchy and my ulcers almost none, no joint pains or tummy aches.
I have cut out (except on special occasions) sugar, wheat and dairy from my diet.
I am on goat milk instead of cow. Apparently our bodies create an immune response to the A1protein in cow milk that isn't in goat.
Sugar is an inflammatory food as is wheat and yeast. These cause the immune response to be triggered which sets off the Behcet's. When I read about all this I was sceptical but it has helped me.
You might need to try different foods - stop them for a week or two then eat again and see what happens.
Hi,
I/m from Victoria and my two children and I have BD. My 11 yr old son has just started on Colchicine and I've been on it for three years, with great results. It's changed my life for the better. I do have flare ups but bed rest is the best for my body. I'm not getting nearly as many ulcers. My daughter it worked for a few months but the BD has been aggressive and she is on many tablets and 4 weekly Infliximab IV. Both my children are seen at the RCH in Melbourne, where we have a wonderful Rheumatologist. I'm sorry you have BD but to have a diagnoses is a step in the right direction. This sight has helped me not only understand the illness but I feel I have a better understanding of the medicines.
All the best.
Hi Courtney. As some have already said, early diagnosis is good! I've been having symptoms since I was 19, and the very first real diagnosis I had was lymphoma 😔 after getting passed around by specialists and hospitals here in Melbourne, I've been diagnosed with Behcets - now age 27. I'm also on Conchicine, and have been mouth ulcers-free for 2 and half months now.
It's a relief to finally have a diagnosis and some meds that do work.
I am the same age female as well my outbreak has been 8 months now. Lidocaine and magic mouth wash are great to numb so you can eat etc. prednisone is really the only to help close the ulcers just a nasty medicine to be on.
Couldn't agree more with the diet changes. I think that and using stress management techniques is literally saving me.
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