To

[Umeti]

I feel a measure of relief finding this group. I was diagnosed 1year ago and it's been a very rough journey. One which im thankful for. And finding ways to get through. There is little or no support group and i am yet to meet anyone from my country with Behcet's Disease, thusmaking it twice as hard to get through each day. I've been placed on new medication colchicine and methotrexate. Please are there individuals on here on that medication cause i would need to know your impression

[UKToronto]

Hi Umeti,

I hope that you are well. Each day is a different one, and with Behcet's, so unpredictable compared to the last.

I have recently been diagnosed with Behcet's and am new to this group as well. I share your sentiment of it providing a measure of relief.

I am really sorry to hear that your year has been a rough one. Hang in there!

Finding the right medications is something I am in the process of doing at the moment as well. I have not been prescribed methotrexate, but have been on a course of colchicine (0.6mg). My rheumatologist prescribed it for my oral ulcers. I find that, for me, it does not get rid of the ulcers, but makes a slight difference in how quickly they re-occur. Instead of a new batch sprouting up every 9-10 days, it will be be every 12-13 days. I have found that, for me, it makes no difference in healing time.

I hope that my reply helps to some extent, and if not, that hopefully somebody else posts with the information that you need.

On another note, you had mentioned that you have yet to meet anyone from your country with Behcet's. If you don't mind me asking, which country are you from? I would be more than happy to help you find resources close to home.

Sending well wishes,

UK

[Umeti in reply to UKToronto]

Thank you so much for your kind words through your reply. You begin to imagine how happy I am being able to talk with someone that actually understand my plight. Thanks also for the heads up on the colchicine as I've been placed of them but i am waiting for some baseline test results(liver enzymes,mantoux test,full blood count,esr and anti retroviral screening not to leave out chest xray)before commencing methotrexate treatment. Asides from my scary erythema nodosum on the shin of my legs I've recently been dealt with groin and armpit swelling, I cant say if its my lymph nodes. It's frustrating and i almost feel like i would throw in the towel any minute but with your response I hanging in and staying strong. I am in west africa- Nigeria. Very few people have been diagnosed with this disease. I'm the only one in my Rheumatology clinic suffering thos condition at the teaching hospital.

[DaniRS78 in reply to UKToronto]

Hi, sorry to jump in for the mouth ulcers has your doctor mentioned the triple mouthwash to you? I am on it as my mouth ulcers are big, multiple and constant it has worked a dream for me I am also prescribed an inhaler meant for asthmatics but if sprayed directly onto an ulcer it stops it before it gets too big or if it’s already in full swing it heals it quicker which I use for mouth and genital ulcers! May be worth mentioning to your consultant if you are struggling with ulcers to see if that’s an option for you because I know for me they can be unbearable and make me very miserable.

Take Care

Dani

[Umeti in reply to DaniRS78]

My genital ulcers are more frequent now than my mouth ulcers were. I think I'm used to the symptoms based on how they appear frequently ...until yet another arises and I'm frustrated and exhausted. I would try your mouth wash most definitely and suggest it to my rheumatologist. Coconut oil or cortiosteroid creams have been very helpful for my genital ulcers. Thanks you so very much dear.

[Curly1430 in reply to DaniRS78]

Hi sorry my name is curly my mouth sores are really bad can I ask what the name of your mouth wash is please x

[Umeti in reply to UKToronto]

Thank you so much for your kind words through your reply. You begin to imagine how happy I am being able to talk with someone that actually understand my plight. Thanks also for the heads up on the colchicine as I've been placed of them but i am waiting for some baseline test results(liver enzymes,mantoux test,full blood count,esr and anti retroviral screening not to leave out chest xray)before commencing methotrexate treatment. Asides from my scary erythema nodosum on the shin of my legs I've recently been dealt with groin and armpit swelling, I cant say if its my lymph nodes. It's frustrating and i almost feel like i would throw in the towel any minute but with your response I hanging in and staying strong. I am in west africa- Nigeria. Very few people have been diagnosed with this disease. I'm the only one in my Rheumatology clinic suffering thos condition at the teaching hospital

[UKADMIN Partner Behcet's Syndrome Society]

Welcome to the Forum Umeti and pleased you now have a diagnosis to enable you to get the right treatment. Good luck with the treatment. As you see, you don't have to be in the same Country or even Continent to get support on Health Unlocked. We have so many lovely supportive people on here who have similar or differing journeys of Behcet's. Wishing you all the best. Do have a look around our website for information on Behcet's and to share with your friends and family. All the very best to you. behcets.org.uk

[DaniRS78]

Hi Umeti,

I was diagnosed this year and was started on colchicine. Along with other things specifically for my ulcers which I suffer from quite badly it has helped me but I have to say it took a few months to feel the results my genital ulcers have slowed right down and I get less headaches, fatigue has improved and so has some hip discomfort I had.

I think for most people it is trial and error in terms of treatment that works for you and sticking to it!!!

Best wishes,

Dani

[Umeti in reply to DaniRS78]

Dear DaniRS78

Thanks alot. Your words were helpful. I hope you keep feeling better. Take care dearie. Bye