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  yentroukgodgirl96 | published 2 days ago | Originally written in English Not going to give up hope

  Within 9days I had two bad flares with genital ulcers.
  I had one so my doc put me on prednisone for five days like usally and it went away but was back again by the 7thday so she put me on more and it did not even work it seem to make it worse. So I went in for a High dose of steriods through IV... Now I am doing better but they are stopping Enbrel and starting Remicade with my metho.
  I am Hoping that all gos well:)
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  sharonmeme | published 28 days ago | Originally written in English I give up

  I was told that I herpes in the 80's. I am now 67, and was told that I had Behcet's by my skin doctor 2006. I was refered to Johns Hopkins in Baltimore MD. I live in northern VA and the drive is about 2 hrs. From 2006 until 2009 I was on predesone (sp), and mouth drops. I was assigned to a new doctor @ Johns Hopkins in late 2009. He told me that I did not have Bechet's, I had idiotpathic (the spelling might be wrong) ulcers and use mouth wash. I have not been back to the doctor since. I have Parkinson's and fibromialga (sp) so the doctors tell me the sore joints, change in vision, GI problems, so I am going to pray that some in VA<MD<DC area can help me. If any of you know a good doctor I would really appreciate your input. Thank you for this web site.
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  • 
    Merrycaringnurse published 13 days ago | Originally written in English

    My Behcets is so out of control right now I'm so discouraged. I also have an amazing rheumatologist but we are running out of options. Currently started a new drug actemra monthly infusion also on colchicine 2xday for the mouth and vaginal ulcers. Curious what are you guts on for treatment right now. Also any of you have gi issues?and finally what do you all take to manage pain???
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    luvflowers published 12 days ago | Originally written in English

    My Bechet's is also out of control and Discouraged with dr's and med's they give us the harsher ones
    like the Imuran i was on made me so sick and i lost so mush weight on it had to quit takeing it. My rummy is currently sending me to the University of Bermingham Alabama there suppose to be studding Behcet's and treating a few Patient's there with Behcet's so i will see what it anything new they have to offer of the Neuro- Behcet's is what im doagnosed with and with mew back MRI i have B ehcet's in my spine now causeing severe numbness and pain in my back and legs ,also neuropathy,and degenerative disc disease, scrolosis. Iwill have to look up the Actemera havent heard of it. Yes i have severe gi problems severe dirrher and stomach pain also im on Colchine.
    And for the pain on lortab and advil but still pain gets so bad it go's through that.
    Hopeing they find a medicine to suit you and ease your pain and symptoms. Im going top see what if anything new they have to offer at the University, But so tired of new dr's and trying new med's that make me so sick insted of better. Hope you feel better!!!
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    Merrycaringnurse published 12 days ago | Originally written in English

    I'm so sorry you are so sick too. I try to stay positive but it's so hard sometimes. I also was diagnosed with neuro Behcets I have been having frequent episodes of scleritis so I'm also on solumedrol everyday. I was dx in 2001 was given cytoxan initially and have tried a lot of meds since. Cellcept worked very well for me for 4 years. But then stopped working no one knows why. I do have an amazing rheumatologist who is not afraid to think outside the box. He has 3 other pts on actemra and tells me they are doing well on it. I recieve my second dose 5/14 I'm trying not to get my hopes up too much or I will be so upset if it doesn't help. I hear there is a Behcets specialist at nyu hospital if the actemra does not work I'm planning on seeing him.

    Pain management is a huge issue for me as well. I'm currently trying fentanyl patch have been on a long acting morphine called avinza but it's not working anymore. I am wondering if anyone has problems with gastroparesis?

    Hang in there luv ill pray they find something to help you as well

    Mary
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  farrisll | published 13 days ago | Originally written in English Herpes

  I was wondering how many of Behcet's patients have been diagnosed with Herpes at one point or another. I was first diagnosed with herpes 12 years ago and I am still surprised how many Behcet's folks are still being mis-diagnosed with Herpes!
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  seekandfind | published 14 days ago | Originally written in English Need to locate a Physician in Minnesota treats Behcets

  My 18 year old granddaughter was recently diagnosed with Behcets based on recent genital lesions and similar history from myself and my daughter. We all appear to have juvenile onset and we all have other varying health concerns. I was also diagnosed with MS about 18 years ago. Granddaughter was treated with Colcrys and is doing much better. My daughter and I had to wait longer for our evaluations and have been waiting for our "rule out" lab results. In calling the clinic today I was told that our Rheumotologist went out on medical leave with no idea of the duration of leave. Another doctor in that same clinic is not comfortable treating us at this point. Since my granddaughters lesions we have researched this issue in depth and that brought us to the realization that we must have Behcets and the doctor agreed. Now my daughter and I have been left hanging and don't know where to go next for treatment options. I am having very bad problems and pain with arthritis symptoms for the last few years. Does anyone know of any doctors that are diagnosing and treating Behcets in Minnesota? Thank you for any information you can provide.
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  • 
    robpleticha published 13 days ago | Originally written in English

    Hi,

    I'm Rob from EURORDIS. I don't know Behcet's in the US as well as some others do here. But a quick search led me to find that the Mayo Clinic campus in Rochester, Minn. has a Rheumatology Dept. that covers Behcet's disease.

    www.mayoclinic.org/rheumatology-rst/diseas...
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  yentroukgodgirl96 | published 28 days ago | Originally written in English Are there any teens 14-18 here?

  I want someone who is around my age(16) who can talk about BD at our age.
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    Tiffanie published 15 days ago | Originally written in English

    I'm slightly older than that, I was diagnosed a few years ago when I was 18. I started getting really sick when I was like 15 or 16. You can always talk to me if you want. Most people get it when they are older, but I understand what it is like to have it in high school.
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    Sydney83 published 14 days ago | Originally written in English

    I also experienced my onset in high school, and would be happy for you to get in touch, although be warned, I am now 28 years old!
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  AmyRuth | published 27 days ago | Originally written in English Diet and Exercise

  Has anyone noticed that diet (including vitamin supplements) affects flare ups? I have only been diagnosed with Behcets for 3 years now. But I think I have discovered that there are certain things that actually trigger flare ups. Just curious if anyone else has had that experience -- and if so -- what triggers yours.

  Also -- I have begun to exercise very regularly. While some days I am more fatigued than usual -- I feel this has helped greatly. I realize some who are in the more advanced stages of the disease may not be able to exercise -- but I just am curious if anyone else has noticed the affects of exercise on Behcets.

  I just want to fight this thing and stay as healthy as possible. I'd like to hear from other fighters.
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    AmyRuth published 15 days ago | Originally written in English

    Very interesting!! Thanks for sharing!
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  Sydney83 | Treatments | published 28 days ago | Originally written in English What do you take?

  I currently take 25mg methotrexate/week (oral tablets), (folate), and etanercept self administered injection (weekly). I take prednisone during a flare as required (usually 10mg/day for 3 days, or 25mg). I use kenalog in orabse paste on accessible mouth ulcers. Pain killers as required (for ear/throat pain or arthritis). I also use difflam mouth wash and lozenges with analgesics as required. Past meds include (but not limited to) colchicine, salazapyrin, immuran, neoral.
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    Tiffanie published 15 days ago | Originally written in English

    I take colchine, immuran, plaquenil and sometimes prednisone.

    Why did they take you off of colchine and immuran? I never heard of what you are taking now. Is it new/better?