Behcet's and scalp inflammation

[nuggetscorner]

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

[Jaxxi]

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.

[gillianTS in reply to Jaxxi]

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

[Jaxxi in reply to gillianTS]

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).

[gillianTS in reply to Jaxxi]

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.

[nuggetscorner in reply to Jaxxi]

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.

[Jaxxi in reply to nuggetscorner]

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

[marimarichristian in reply to Jaxxi]

I also have scalp break-outs. Sometimes it's too painful to wash my hair. I've found Grandpa's Pine tar shampoo to be the best. They also make a body wash. I smell like a pine forest but that's the least of my problems.

[Hidden]

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

[gillianTS in reply to Hidden]

Hi Scruffymouse

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

Thanks, Gillian.

[nuggetscorner in reply to Hidden]

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

[rooser1]

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.

[nuggetscorner in reply to rooser1]

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!

[jzeis]

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.

[nuggetscorner in reply to jzeis]

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

[kathleen71]

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

[gillianTS in reply to kathleen71]

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

[kathleen71 in reply to gillianTS]

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

[sneakyblonde in reply to kathleen71]

Be advised, "red palms" can be a symptom or sign of anemia. I know, I have anemia of Chronic Inflammation. Severe anemia can be fatal, please get a CBC done and keep an eye on it.

Also, chewing ice and eating sugar are known signs of anemia.

(I mean pouring white sugar, in a cup or bowl and eating the white sugar with a spoon. (No cereal or coffee - just dry sugar.)

Also, I am in California, USA.

Here we have, NEUTRAGENA T/Scalp. Antiproritic (Anti-itch) liquid 1% Hydocortisone. It can probably be ordered online.

Be sure to be checked for any fungal infections by a dermatologist, like Ringworm. (It is not a worm! It is a fungus.)

Over the counter "Nizoral" shampoo might help.

A prescription shampoo, "Ketoconazole", treats fungal infections of the scalp.. Like the oral meds, but with Behcet's, most doctors don't want to prescribe the oral, because it can damage your liver and we have enough problems.

One teaspoon of cider vinegar in a cup of warm water, as a rinse after shampoo, or alone once daily, if you choose, can help relieve scalp itch. (You won't smell like vinegar, the odor doesn't last very long).

Caution: Vinegar is an acid . Do not ever pour a stronger solution or straight vinegar on your scalp - it can cause chemical burns, especially if you already have a rash or broken skin! A little is good - a lot can cause more problems you do not need.

Do all of those leave you scratching your head? Try them, your itch might stop.

Best of health, to all of you,

Cindy

California, USA

[Willowmina]

Plant Paradox lectin free food will help so so much

[Niki318]

I have scalp inflammation and I also get scalp ulcers! I try oatmeal hair masks all natural and soothing

[2106]

I don’t know where you live but I use shampoo and conditioner from the Green People. greenpeople.co.uk. They are more expensive but organic with no chemicals. They do everything deodorant etc. My head felt sore, tender to the touch most of the time but since using the above back to normal. Xx