Behcet's Syndrome Society
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Behcet's and scalp inflammation

I have a case of horrible chronic scalp inflammation. I feel like I can eat nothing, as I react to everything, but then again it happens when I eat nothing, so stress, or low blood sugar and high histamine levels all c an cause it....I can't have citric acid, fermented foods, or nightshade's, the list goes on and on. But my scalp swells so quickly and if I don't somehow relieve the pressure that's building, it will just keep spreading across my scalp until it finds exit. I just wan it to stop because the pain is so bad. I have used every topical treatment as well as oral prednisone and antibiotics. Could a leaky gut be the culprit or is it just my Behcet's flaring? Any treatments i should try? Thank you

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Mine is definitely connected with Behçets flares. Colchicine helped quite a bit. Also, you might like to try using hair products that do not contain SLS or similar detergents. When I used regular shampoos - even baby shampoo or organic shampoos - I would get deep, bleeding sores. Now I use a soap-bar shampoo (from funkysoaps or soapnuts.co.uk) and the sores stay tiny.

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Hi Jaxxi

Which soap bars are you using I note there are several listed which ones have you found to be the best.

Thanks, Gillian

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Personally I like the Ayurvedic Shampoo Bar from soapnuts.co.uk, and the Oatmilk and Argan oil unscented soap bar from funkysoapshop.com. I have tried lots of different bars from both suppliers, though, and haven't had a bad reaction to any of them. They are also very kind to my hair - I have fine hair and find I don't need a conditioner after using these bars (conditioners are another source of SLS).

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Thank Jaxxi I have now ordered the soap and was pleased to read they help with itchy scalp this has been driving me mad since I had a bad reaction to colchicine a few months ago. I have oily hair which has got worse and it is fine too I feel I have had quite a bit of hair loss this year especially at the front which I so dislike :-( looking forward to starting to use this soap to see if it makes a difference.

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I am starting back Colchicine I've tried different shampoos but will now try this bar soap. My sores are bad...skin practically peels chunks. They blister and bulk up. Can't describe it even as you know. Thank you so much.

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Mine were horrible too, crops of bloody scabs that made it impossible to go to a hairdresser, or use any dyes. I felt a right mess. The colchicine took several months to work but it was a godsend. I had to stop it after 18 months due to stomach issues. The scalp sores have come back but now they stay tiny and go away quickly without even breaking the surface.

This may be due to the shampoo but I have also changed my diet to nightshade-free. I was having problems with what I can only describe as nerve inflammation - burning pains in the neck and arms keeping me awake at night. These have resolved since cutting out nightshades, and come back if I break the diet: I call it 'potato arms'!

I wonder whether the scalp sores are something to do with inflammation along a nerve route too. My outbreaks follow distinct paths and a crop is only ever on one side at a time. Usually the left, but sometimes the right. The pain associated with it can be very nasty, quite shingles-like, and often involves the temple, eye, ear and tongue on the affected side.

But it's a lot better now than it was a few years ago. I hope you can find some relief too xxx

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Hi I had the same problems but recently bought the nioxin shampoo conditioner and scalp treatment . So far so good . My hair still comes out a lot but my scalp is not as swollen and the pain eased a lot . Well worth trying . I hope you find this useful . Sending big hugs x

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Hi Scruffymouse

I have not seen this brand before I will have a read.

Thanks, Gillian.

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haven't tried this brand yet...thank you so much

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sounds sensitive to behcets- keep a food diary. unfortunately- you may have a REALLY bland diet for a while until you can figure out what you can have. When I was in my worse flare, I was having thrush (and didnt know it- it was there for years...is your scalp fungal related?) and so for the first week once I figured out food was related- i ate bland chicken, green peppers and onions. IT WAS AWFUL- but i started feeling better. I myself, am now on a ketogenic diet and have been seeing amazing results with decreasing inflammation. hope this helps.

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I am doing bone broth for three days then starting elimination diet. green peppers and onions would put me in hospital almost, so my diet will be extremely bland haha. I have to take back my health as it is hard to function working full time and raising two kids alone. My body feels like it is killing me. Hasimotos on top of Behcet's has put my immune system in shock. I was tested for Thrush years ago when being diagnosed with Behcet's. But I have used so many steroid solutions and cream that I need to test again. Thank you for these suggestions!

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My rheumatologist prescribed a shampoo for me called Capex (fluocinolone acetonide, which is a steroid). I shampoo with it 2 or 3 times (not daily) for a week when my scalp starts getting inflamed or has lesions. It works really well for me.

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I will ask my doctor tomorrow! Thank you so very much!

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hi, aside from sores on scalp, does anyone just get a really sore scalp? and bright red palms ? thanks. joanne

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Hi Kathleen71

Yes I do get a sore scalp I feel at times someone has been pulling my hair hard but it is not always all over my scalp, I know I used to have horrendous pain in the right side of my head, ear and jaw until I eventually discovered I clench my teeth so hard when I am a sleep I now wear a mouth splint every night which does help mostly, wonder if the sore scalp is from this or another issue. I do get red palms, not bright red, but not that often and they do not bother me.

Gillian

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Thanks for your reply. My scalp is sore in one patch on top like as you say as if my hair has been pulled. My palms do not hurt but are always so red i look burnt and i guess it is the BD

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