Has anyone else gotten a chicken pox-like rash from their Behcets? I’ve had 3 rashes over the last 14 mos, in varying severity, one which left me hospitalized for days and covered in blisters head to toe. SO insanely itchy! Doctors have given me every test out there and are finally blaming it on my BD. Would love to know how to avoid it and how to treat it. My steroid creams aren’t doing enough... thanks much!
The pic is the worst of the 3 rashes I've had. The one I have now has fewer, smaller, scattered blisters. Oddly, my face never has gotten a blister, but everywhere else has (hair, ears, palms of my hands, etc.).
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lalamilw
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I m glad someone else gets this - not glad in a way that you have it, just that i m not the only one. I have had 7 episodes of this in 16 months. It starts off like a rash, then the spots turn into blisters and it spreads. Eventually after numerous blood tests and swobs it was put down to the Behcets (been diagnosed 4 years). Had a referral to Birmingham C of E last week and I was told that this had never been seen in behcets before so they are questioning my behcets diagnosis. Are you in UK? If so, have you ever been treated at any behcets centres of excellence?
Yes, nice to know we're not alone with this symptom! I am in the US and the head of derm along with many other drs at the Medical College of WI, were baffled as the 18 tests and 3 biopsies of my rash did not indicate any virus or were negative for any other condition. After my second rash, the dr said she could confirm it wasn't a virus, but was most likely a manifestation of my Behcets. She put me on Dapsone, which caused anemia, but it did help heal the last rash. I just started it again today and will deal with the anemia if it can stop the progression of this rash that has been developing over the last week.
I was been diagnosed in my late 30's by the only Behcet's specialist in the US, Dr Yazici. It's been 7 years since then and I'm on Colchicine, which has reduced my symptoms. Mouth sores have always been continuous for me since I was a teen, but the skin, genital, and arthritis symptoms started in my 30's. (luckily no eye or brain problems) I have a ton of food sensitivities that cause sores, namely nuts, seeds, berries or anything that came from a hard nut/bean (coffee, chocolate, popcorn). I've been told to cut down on dairy and gluten too, but what foods are left to eat?!? I do think stress contributes to these breakouts, but how do you really stop all stress?
Anyway, please keep me posted if you ever find out more or get another diagnosis. The weird symptoms of Behcets are frustrating bc you don't know how or why they occur. It's helpful to exchange notes. Thanks for your reply and best of luck with everything!
They have taken loads of swabs/tests on the rash I get and they always come back negative for viral and bacterial infection, it stops spreading with intravenous steroids and a dose of infliximab, I m also on colchicine and recently started on methatrexate, Haven t had the blisters now since beginning of January but problem with eyes still ongoing, They have done another round of bloods so will let you know if anything is flagged up, Take care,
before I had my behcet's diagnosis I had lots of strange rashes coinciding with flares which were variously put down to different things 'e.g allergic reaction to chicken pox virus (whatever that means), german measles nut allergy. After 4 years at London COE we seem to have my behcet under some control with interferon alpha - but its quite a tough drug to take. I still got bleeds in my eyes though at times which appently is a sign of unstable eye disease . I am seeing a glaucoma-combined-with-uevitis specialist at Royal London in March. I think the COE arranged this for me.
Sorry for your symptoms! It's nice to know some of us have the same undiagnosed things, but would be better if we knew how to stop it. Hopefully your interferon alpha is helping. I've tried several of the Behcets drugs, but not that one....
Also thought it was Interesting to hear the word "nut allergy" as nuts, seeds, berries are a problem for me and cause lots of canker sores.(see my reply in the above post) Who knows how it all relates to the rashes.
Anyway, thanks for your reply and keep me posted if you ever get anymore info on this type of rash. Best of luck with your eye problems and other symptoms too!
I have not been diagnosed but have a doctor that is leaning towards BD.
I have had 11 episodes that appear to look act and feel like shingles. I have had neuropathy with them too. I can tell when the break out will happen Cause I feel the burning sensation. Does that happen with a behcet’s flare?
I have never had a break out in the gential area but have had several different outbreaks in my mouth/ down my throat.
It’s so frustrating when you go to a dermatologist, my doctor called asking them to do a biopsy as I was having my 3rd outbreak since Nov and they totally looked at me like I was Batshit crazy! They refused to do the biopsy and sent me with the diagnosis of ROSECEA! Along with a $48.00 cream that they insisted I purchase and start using.
I’m sorry each of you all have this disease and from what I keep reading from these posts that it’s been a long haul for most of you. I have terrible jabbing throbbing headaches can’t lay my head down flat on a pillow. Can’t wash comb or blow dry my hair without pain.
Can anyone tell me how you got your rash tested and or what blood work your doctors have done to find out?
I was having vision issues and a retina specialist is the one that is suspecting it. The blood flow is 20% less in the left eye where the rash has been. I am very light sensitive and am now wearing polarized amber tinted sunglasses indoors.
Yours does sound Behcets-like. I've also had the scalp pain/sensitivity before and shingles looking rashes too. The blood tests were taken in the hospital to test for every type of virus that presents like that. And they took biopsies of my blisters too (and biopsies of canker/genital sores in the past). Behcets is more of a 'ruling-out others' diagnosis, than it is a definitive diagnosis. But some of the biopsies can indicate consistencies with BD. You have mouth sores and eye problems and skin problems which would likely get you a BD diagnosis with a dr experienced with BD. EIther way, the dx matters less than just getting the right treatment/meds. Keep advocating for yourself and don't take generic dx for an answer if it doesn't fit your symptoms. Most BD people have to see many doctors over years to get someone with the experience and creds for a diagnosis. Sorry for your issues! Best of luck!
Thank you for responding! It would just be nice to know and start the medicine. As of right now I can’t get into a neurologist until next month. I see the eye specialist this next week and she was the one that had suggested the soft diagnosis of BD.
She wanted to do a CTA scan of the brain but I’m allergic to iodine and the contrast is of course iodine based!🙄
I’m just tired of the constant neuropathy pain and headache that goes from throbbing to burning sensation to zingers and zaps.
Just posted a pic on the original post. That was the worst of the 3 rashes I've gotten. Mine now looks more like regular chicken pox with smaller scattered bumps/blisters that itch terribly...
Omg, your problem sounds so terrible!! Skin horror - I know a thing or two about it, to be sure. I had blistering on my genitals that ended up causing the skin to literally dissolve off. The pain associated with these inflammatory skin issues is severe, and I had to cost depend pads with vasoline so that my penis and testicles (missing most of my skin) would not stick to my underwear, rip and bleed every time I moved or went to the bathroom. The problems left significant scarring, but oddly enough I was able to keep the whole thing from getting infected for the tree months each of the two episodes lasted. As my genitals didn’t have any skin, the severely painful tissue (normally covered by skin) wept water continuously. I had to take only cold showers to avoid screaming in pain. The most recent occurrence was about a year ago, and a different dermatologist, who was well-known and respected, told me that it was categorically Behcet’s that was causing the problem. It was not bacterial, fungal, a chemical reaction, an STD or any other thing that my other doctors had considered. My new dermatologist said the thing we needed to do first was to shut down the immune response, which had caused my skin to come off. He prescribed Elidel Cream, a very expensive little tube, and I noticed an improvement by the second day of use. I have not had any more outbreaks since using Elidel. I would definitely recommend talking to your doctor about at least trying Elidel on a very small patch of your lesions to see if there is a benefit. It wouldn’t seem like shutting down your immune response would help, but it sure helped me. Also, if your skin is itching severely and unbroken (very important), Doxepin Cream will alleviate the itching when nothing else will work. You cannot put Doxepin on any broken skin. The Doxepin Cream forms a medicated film that stops the itching. Scientists are not sure why it works, because it is a powerful antidepressant when taken orally. Another hung about Doxepin: if you use too much, it may make you really tired. If that happens, try using less. In summary:
Elidel for lesions (only try a small area first)
Doxepin for itching
I sure hope this helps. I cannot post a photo for obvious reasons - I think some people would pass out if they saw it! LOL
Yikes! That sounds horrible. My sympathies! Thanks for the treatment options. I am going to ask about those options when I see my dr again. Wishing you better health! Thanks much!
Omg the blisters - you must be in agony - and it could be a reaction to medication!! Have you taken Sulfa-drugs recently? It’s a form of antibiotic that can cause skin blistering.
Nothing new. I can only think that stress put me over the edge as I had a lot going on before this started. I'm typically pretty healthy except for regular canker sores and mild arthritis pain. I only take colchicine & steroid creams. I've learned not to push anything too hard, but I had a hard workout and lots of work & life stress before this happened. My picture was from the worst time I've had this. Now, it looks like regular scattered chicken-pox blisters, but insanely itchy. Best to you!
The dermatologist gave me elides cream as well for my face where I had a lot of swelling and redness and a strong steroid cream for use on body. Elides only helped a little. On dermatologist advice I cut out some drugs which can cause selling and rashes - arcoxia and rampril -and was switched to preservative free eye drops as much as possible. I started using neals yard starflower moisturiser on my face. Really helped . starflower is another name for borage and is anti social nflamatory. It also contains Alo Vera and liquorice which are also good anti inflammatory. Maybe worth a try on face
Hiya I get severe blistering like you've explained if I go outside in bright light and/or suñshine. Even just to peg the washing out will start a flare up off & I always cover up my skiñ. I have been told I have vitamin D deficiency & have been to avoid going out in bright light & sunshine which has stopped the rashes which used to lead to my skin ulcerating. I now take a vitamin D supplement and it has settled down dramatically.
I hope this helps & I can sympathise with you & the constantvitching.
Yes, thanks! Just a few scabs left, but now lots of unexplained dermatitis. Had skin/patch testing this week and (not-surprising), nothing of the 100+ substances showed as an allergy except a mild reaction to linalool and limonene (which are naturally occurring fragrance-additives to many products). I will try to go fragrance free and see if it helps... But just can't figure out what exactly is 'tipping the bucket over' into this type of blister rash that has become a new normal for me. The good news was that the patch derm said she may present my case at her upcoming conferences, which is awesome as I actually have a new doctor who is intrigued instead of just passing me on as a hopeless case! Best to you!
I feel so sorry for you as it looks incredibly painful. I do hope you get relief soon.
My daughter had something that looked like that but it was Stevens Johnson Syndrome, a reaction caused by Tegratol. It was all over her body and looked like bulls eyes all over. Her body became puffy and eyes closed. Her liver count was so high that they considered incubating her and putting her on life support. BUT although on many drugs due to BD she has thankfully never had it again.
Yikes! Sounds scary. Thanks for sharing! It’s helpful to hear who else with BD shows these symptoms so it can steer the doctors in a direction they haven’t thought of. Hope your daughter is doing well! I’m making an appt at Mayo Clinic (U.S.) and will be sharing these similar cases with their team with the hopes they will find a pattern and treatment. Best to you and your daughter!
All the best and please, if possible, let us know how you go with new Mayo. I can't remember if you said you were on Azathioprine or Infliximab. Both may dampen down immune system to help in the future. I'm sure they will discuss the options with you. My daughter is on OpsDave creams for bad ulcers that become nasty. All the best.
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My picture was from the worst time I've had this. Now, it looks like regular scattered chicken-pox blisters, but insanely itchy. Best to you! 
More disappointment
Menstrual issues?
Behcets and cancer.
Unsure of bechets or some other autoimmune
What do the gential sores/lesions feel/look like (female)?
