Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

Does anyone else have Behcets ?

sharronsharron Posts: 3
edited 11. Sep 2009, 15:24 in Living with Arthritis archive
Hi am having another go to see if there is anyone else on this site who has Behcet. I have been diagnosied 2 years lots of other complaints thyroid, diabetus, asthma, and now to top it all RA. Have tried various dma to no effect now on Humari having problems as I keep getting infections. Would love to hear from someone in the same position and how they cope on a day to day basis.
I do read most of the posts and find bits that help it would be nice to find someone in the same boat.
With love
Sharron

Comments

  • mike147mike147 Posts: 13
    edited 30. Nov -1, 00:00
    Hi sharron,

    I am sorry I have OA , I do hope that you get help here.

    if you dont mind me asking what is Behcet?

    Mike R & Hazel
  • linmadlinmad Posts: 18
    edited 30. Nov -1, 00:00
    hi sharron fraid i also have o/a BUT my cousin ,40 was diagnosed with behcets about 18-24 months ago he has had loads of differant problems and goes up to st thomas hosp. london.
    joint eye ulcers immune come to mind and he has now been told he is unfit to work, he drove plant machinery and has had all his certificates allowing him to do that taken away.
    apparently this affects people of meditteranean origin more often, with us we think it might be something to do with having a spanish gran
    do you see specialist on regular basis? if not try to get referall to somewhere like st.thoms they know all the really good meds to try you on good luck lindylou
  • sharronsharron Posts: 3
    edited 30. Nov -1, 00:00
    Hi everone
    Thanks for replying. Mike and Hazel its a bit like not knowing whats going on all the time. Mouth ulcers, genital ulcers, also can get them in your eyes and go blind if not treated quickly. Inflamation all over the body like RA . Basically the immune system goes into overdrive and keeps going, not very helpful and the tierdness well if I am awake for more than 2 / 3 hours I am doing well. Lindylou I am one of the lucky ones I see a Professor at the Hammersmith who has been really good. Am now on Anti-tnf this is my second lot now on Humari but having problems as I keep getting infections. The reason I asked the question was I would like to talk to someone else who has the disease and is on the same meds as I am.
    Anyway once again thanks for replying
    Love Sharron
  • anishaanisha Posts: 1
    edited 30. Nov -1, 00:00
    :( Hey, My names Anisha and I was diagnosed 5 yrs ago with BD but suffering with it for 10yrs. I am a new member on the forum and I am from Birmingham desperetly looking for someone who lives closeby who has BD for me to meet.
    I am on a cocktail of drugs and nothing seems to b working.
    Prednisolone 10 - 50 =mg per day
    Azathioprine 50mg 1, 2 x a day
    Duragesic Patch 50mcg evry 72hrs
    Oralmorph when needed
    Colchicine when needed
    All vitamin Injections as I don't absorb oral meds to well
    Topiramate 25 x 2 a day

    I recently had a Lignocaine Infusion. Worked gr8 for about 4wks but now bck to square 1. Has anyone had the Infliximab Infusion? Has it worked? Please let me know, as i have hear all good reviews on it and want to request it from the rhuemo at hosptl.
    Anisha xxxx[/i]
  • filmladyfilmlady Posts: 1
    edited 30. Nov -1, 00:00
    Hi,

    I've had Behcet's for 30 years, but it took 17 years to get diagnosed. I live in the U.S.

    Here are some links that you might want to check:

    Behcet's Syndrome Society (U.K.) http://www.behcets.org/uk
    Behcet's Disease Books and Resources (my site):
    http://behcets.weebly.com
    American Behcet's Disease Association: http://www.behcets.com

    All the best,
    Joanne Zeis
    joanne at behcetsdisease dot com

    anisha wrote:
    :( Hey, My names Anisha and I was diagnosed 5 yrs ago with BD but suffering with it for 10yrs. I am a new member on the forum and I am from Birmingham desperetly looking for someone who lives closeby who has BD for me to meet.
Sign In or Register to comment.