Behcets patient in Alabama/USA: I live in the... - Behçet's UK

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Behcets patient in Alabama/USA

Shari1218 profile image
11 Replies

I live in the Southeast USA and I was diagnosed with Behcets Syndrome in 2015, but I believe I’ve had it with milder symptoms since I was 24.

Anyway I’m wondering if anyone else has petechia when you’re in a flare? My Rheumatologist says BS causes skin manifestations but not petechia. Every time I have a flare of this horrible disease, I get petechia all over my left forearm. It’s so embarrassing! I notice people staring at it and I want to run screaming!

Please let me know if anyone else has this or what your dr in the UK says.

11 Replies
Ang4upmich profile image
Ang4upmich

I used to get my palms little tiny blisters all over and they hurt. IV remicade treatment has eliminated it !!

gillianTS profile image
gillianTS

Hi Shari218

According to Behcet.org website detailing symptoms Petechia is a symptom of Behcet's, read dermatological symptoms (3)

behcets.org/reference/sympt...

Saassii profile image
Saassii

Be careful there's no signs of mold or water damage in your home, workplace or environment, that triggers petechia and flares Behçhet's.

Shari1218 profile image
Shari1218 in reply to Saassii

No mold or water damage in my home, thankfully since I’m also allergic to mold/penicillin

Saassii profile image
Saassii in reply to Shari1218

Excellent. Stay vigilant. Use accelerated drying techniques in showers and avoid toxic clean ups after. You'll be especially susceptible, so good it's not a problem, don't stick around anywhere it is.

duke22 profile image
duke22

Yes. By the way dr. David McClain was our behcets dr in birmingham al. He was very knowledgeable and helpful. My son was very limited in treatment options because he was a childhood cancer survivor so it eliminated meds for us like humira. Dr mclain saved my sanity as a mom and my sons as someone who "got it" yes on the petakie

Shari1218 profile image
Shari1218 in reply to duke22

Thank you I’m not but 50 miles south of Birmingham. I’ll look up Dr McClain! I hope he’s still there. I’m so frustrated that my Rheumatologist thinks petechia is not a symptom of Behcets!

duke22 profile image
duke22 in reply to Shari1218

Not to sound morbid but he is old. He founded the college of rheumatology (the big conference of rhumatoligist) and I dont think he will ever retire. His mom lived till 101 he said. I know it was selfish of me not wanting him to retire or die but we needed him. I feel a lit of people on here (just my perception) dont believe having hla factors b 51 or b57 mean amything but they do to me and dr mcclain. We happened to have my sons hla factors from his bone marrow transplant earlier. One of the 1st questions I remember dr mclain asking (very stressful hospital event) was did we know our hla factors. I said I had them but didnt know them and he said no worries he would run them. We r plain white Americans. We have zero history with the silk road etc. The best thing about mclain qas believing there was an issue and back in 2008 for a good 8 years took great care of pain management as he xouldnt di anything else for us (as my son had cancer treatment which ruled out the other neds). Anyway good luck. Also off topic my son went on the all beef diet which is rough but it has helped him tremendously go from essentially bedridden to walking on the treadmill, taking dogs out taking kids to the bustop etc. Good luck

Shari1218 profile image
Shari1218 in reply to duke22

Thanks for the info, I think I’ll stick with my dr for now. So far the only thing we’ve disagreed on is this petechia that has popped up on my arm. He also said that on the good side of Behcets that people in the USA have milder symptoms. Well yes I was born in the USA but my forefathers were not. I know one was German, the others were from the UK and one was Jewish but lived in the UK. So my DNA is not American by no means so I’m not going to get my hopes up about milder symptoms!!

Oh and now my insurance is giving me trouble with Colchicine and Colcrys! Dropped those two from my coverage. So I have to get name brand or get it from a Canadian pharmacy! Oy Vey they are driving me nuts !!!

duke22 profile image
duke22 in reply to Shari1218

I esurance always drove me nuts. Have u tried the Good rx card. We have had great luck with that. It is my understanding there was nothing to do for the petakie. At least it wasnt painful. Great luck to u

rooser1 profile image
rooser1

yeah i think thats weird hes not connecting the two- broken blood vessel involvement with a vasculitis..... oh okay.

continue to be your own advocate and keep track of YOUR BODY'S warning signs.

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