Help/advise

Hi all,

I have not yet been diagnosed but my GP is sure it must be behcets.

Im turning 35 shortly, I have suffered mouth ulcers for as long as I can remember though my skin was generally pretty good. But this last year it has been awful, my forearms being the worst so I now don't wear short sleeves, my whole body had been covered in these big red and yellow sores, and the last few months it has broke out on my face around my nose being the worst. I also suffer joint pains in my back mostly, which for years I had put down to years of physical labour...

I have only started researching this disorder and I must say nothing I have read is filling me with any confidence, I understand there is no cure but is there anyone out there who has seen this condition improved with meds if so could you please share...

I must say I am a very fit individual always have been and I am determined this is not going to get me down.

My doctor had given me a 6 month course of antibiotics for the skin lesions I had been taking them for 2 months or so and my skin cleared up brilliant then I missed my repeat prescription before Christmas and my throat flared up worse than ever with ulcers and my skin was the same... Have any of you had any success with antibiotics???

I'm back on them now but worry that when the course is over will it all hit me harder than ever???

14 Replies

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  • Sounds like you have been going through it a bit!!

    I am also 35, and for at least 15 years suffered with horrific mouth ulcers, and recently started suffering with erythema nodosum on my calfs and shins.

    I was diagnosed back in October and put on a course of colchicine to help tackle the mouth ulcers, which helped massively (have only had 4 ulcers in the past 3 months, usually have at least 12 or so continuously, currently ulcer free)

    I also recently invested in a hot tub, which I use daily, and have found this has taken aware all my aches and pains. I am not sure if it is the hydrotherapy, the stress relief it gives, placebo effect, or just happened to coincide with the end of a nasty flare up, but I am feeling the best I have done in years!

    I think that this disease is a very personal thing, seems to effect everyone in a different way with differing levels of severity. What works for some does not work for others, but stress seems to be a very big catalyst for many many people.

    Try removing the stress, eat well, and listen to what your body is telling you.

    I wish you all the best in luck.

  • I was diagnosed with BD a few years back but I have suffered looking back for the last 40 years. Mouth ulcers I have changed my toothpaste to Forever Bright Aloe Vera. Changed this about a year ago and I must say that I have had no major flares in this time. Used to have about 25/30 any one time and these would take months to heal and when they did the next lot would kick in. I also take Merc Sol 30c which is a homeopathy treatment, take 2 tablets every 4 hours until the pain reduces then reduce to 1. Always put tablets in the lid of bottle never touch with hands. Also for my joint pain have been suffering inflammation of the joints, been taking Manuka 10+ 15+ 1 spoonful in the morning with small amount of boiled water this definitely helps. Also I have been tested for Vitamin D as since I have inflammation seemingly this could reduce my levels. One of the effects is bone pain which I have been having for the past 4 months, and tiredness on top of the fatigue that I already suffer is not good. Just got results and my levels are very low. Also eat organic food, don't drink coffee as this makes ulcers worse. Never use any products on my skin other than a Hibi Scrub which is an anti bacterial wash which vets use. I hope this helps, might not work for everyone but if it doesn't no side effects etc. All the best hope you feel better soon.

  • Thanks very Much guys it's just good to hear some positive feedback, I wish you all the best this new year👍👍👍

  • Hi there,

    I sympathize with you as I was also diagnosed "officially" at about the same age. Had symptoms (mouth ulcers and skin rashes, back pain) all my life but also vhalked it up to hard work (nursing) and genetics.

    Out of curiosity, which antibiotic were u put on? I recommend doxycycline (fr personal experience) because it will help clear up the boo-boo's as well as help with joint pain. You can be on this one longer term. It is used to treat a variety of infections as well as lyme disease. It's harsh on the stomach-so ALWAYS TAKE WITH FOOD...i know:/ This is a good starting point until you are properly diagnosed:)

    If I might add, I did notice a HUGE difference in frequency of rashes when I gave up gluten (wheat). It also gave my guts relief, but I'm back to struggling not due to the wheat but the flare-up. Some days it feels like my stomach just won't digest the food, it stays there and i bloat, nausea and at times projectile vomit , to which I get huge relief!

    Start with the antibiotics, diet, get a diagnosis and go fr there. We are always here to chat!

    If you get good results fr those antibiotics-then you are on to something (relief fr sores, joint pain,etc)...you could consider diet too. I gave up gluten, then dairy (i use almond milk) I see a lot of people on this site confirm that the diet has helped, but does not eliminate the disease!

    Just fyi, I was first put on plaquenil, colchicine -which i still take. I've tried methotrexate, etc and a few biologics (enbrel,etc)....I can't seem to shake this flare fr Oct'12.....back on prednisone now:/ Waiting to see dermatology for hairloss (bigtime loss) and GI for my gut problems. Not sure about where u live, but the waitlists here (Canada) are atrocious:(

    I wish you lots of luck and hope u have a good GP....that helps to start things off and to have someone backing you up.

    Best of luck to u..take care:)

    Gen

  • Hi I appreciate the reply,

    It is indeed doxycycline I have been put on, I am just over 2 months into a 6 month course and waiting to see a dermatologist though I have asked to be referred to a rumetogist.

    I am having swabs taken today on the ulcers on my throat and I will request blood tests...

    Would should I have the blood test taken for???

  • Definitely get these done:

    ESR( marker of inflammation)

    ANA's(markers of auto immune)

    CRP (c-reactive protein)

    Your md should have a general idea of what he's looking for. The rheumatologist can do further testing like HLA B51, etc

    Good luck! And do you feel better on doxy?

    In response to another's comment, these antibiotics are not for mouth ulcers, but more so treat inflamation in joints and clear up skin rashes/ulcerations.

    Good luck to you today!

    Gen

  • Perfect I appreciate your help!

  • Hi , Antibiotics are not efficient for month ulcers , anti fungal are more helpful.

  • Hi Pauslhampsey81,

    I've had BD since I was 23, but didn't get diagnosed until I was 40. Now I'm 59, though, and I want to give you some hope. The older I've gotten, the fewer flares I get, and they don't last long. My only BD med right now is colchicine/Colcrys, which I've been taking for 20+ years. In my case going through menopause helped, since a lot of my flares were around my period. I haven't felt this well in a long time, but I know everyone's not this lucky.

    One research study by H. Yazici followed 387 BD patients to see what happened to them over 20 years (http://www.ncbi.nlm.nih.gov/pubmed/12544711). "All mucocutaneous and articular [joint] manifestations [tended to decrease significantly with the passage of time]. Both the onset of eye disease and its greatest damage were usually within the first few years of disease onset [but] severely impaired vision did not always mean an eventual loss of useful vision. These suggest that the "disease burden" of Behçet syndrome is usually confined to the early years of its course, and in many patients the syndrome "burns out." *However, central nervous system involvement and major vessel disease are exceptions.*

    For anyone wanting more info on BD, here's a list of helpful links that I've posted before:

    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

    Behcet's Syndrome Society Fact Sheets for patients:

    behcets.org.uk/information-...

    Behcet's Syndrome Centres of Excellence (UK):

    behcets.nhs.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):

    essentialbehcets.com

    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):

    behcetsdisease.com/links.html

    All the best,

    Joanne Z.

  • Hi Joanne, I appreciate your time your views are and comforting I will work my way through your listings and I'm sure they will be of great help it will save me hours of searching for answers in the abyss of the internet lol thanks so much 👍

  • Thank you so much from Pennsylvania USA

  • Hi! Im new here myself but have been dealing with Behcets through my pharm school years (the last 4 to be exact) so I might be able to help with some questions people have a tough time answering. Firstly, some antibiotics may help. this is thought to be so with dapsone and I have heard of other people having good success with clindamycin (another antibiotic) because they help reduce the amount of bacteria normally there that cause an immune/inflammatory response. Behcets is tricky but manageable, just gotta go through a trial and error time period with different things so please dont lose hope or become impatient! Secondly, try and see a rheumatologist if you can! they can be quite helpful for these things (they are complex and hard to nail down right without adequate input). Hoping things get better!

  • I don't know your health history but I would like you to know that I suffered with oral ulcers for the last 3rd until I was started on remicade 600mg IV infusions every month. SORE FREE FOR LAST 14 MONTHS !!!!

  • Oral ulcers for last 30 yes I meant to say. Sorry for the typo

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