hello :) I just wonder has anyone else had vasculitis on scalp?

hello :) I just wonder has anyone else had vasculitis on scalp?

I had my diagnosis back in 1997. Its been mostly affecting my bowel/joints/mouth but about 2 years ago it started on my head. Its currently under control with Pro Topic this has started giving me some side effects (really burns when water touches the scalp) I just wonder do you know of anything else that helps this?

18 Replies

  • are you taking prednisolone?

  • Hi I've been as high as 100mg but it did nothing. only put loads of weight on hehe

  • I did the same , but it was the cause of my issue, had to change meds

  • I wonder if there is something in this and Behcets,don't think there is anything written about it but i've found I only really respond to high dose IV steroids (they might help you if you need in the future? :) ).

    I was on v high dose orally too and they didn't do anything for me really at all (apart from the rubbishy weight gain lol) but I know they say people with behcets sometimes don't absorb meds properly so IV is better,hmm just thought reading your comment!..xx

  • Hi Hun,

    I have had smaller breakout in my hair a while back bit I have long hair so it is bit of a nuisance. Mine would always clear up within a couple of weeks so nothing like the extent of the problem you have here.

    Yours looks very sore ! Ouch !

    The only thing I found that was soothing until it cleared up was tea tree oil. This comes in all manner of types of lotions, oils and shampoos so really you can take your pick if it seems to help you. It is also pretty inexpensive so maybe worth a try ?

    Good luck !

    Big hugs XX

  • All I can do is echo what xandii says. I too have very long, very thick hair and the lesions are difficult to get at and difficult to treat. Tea tree oil!

  • Hi yes I too suffer with this. Although I have had BD for 28 years, this only started about 6 years ago. At the onset it was driving me crazy and my then GP just told me to change shampoo, careful with hair products, then some cream etc etc. it comes and goes and at times much worse and linger stay than others. I saw my consultant a few weeks ago and took so e photos to show ( as I either kept forgetting to mention it or had no signs) and he said definitely down to BD. He didn't have any particular advise as for quite a few years I haven't been taking any meds for my BD. This is because of the strong meds I e been taking for another problem so I have just been riding out any kind of flares. But, more recently my other problem has eased and the Bd is taking over again so I am going back onto Colchicine and hopefully it will help all round. Hope this helps you .....at least you are not alone!!!



  • yes its helped a lot hearing others have this problem.

  • In 2010 I got a tiny infection on my scalp from a hair clip rubbing & breaking the skin. It turned into lymphadenitis & cellulitis, tracking between two swollen lymph nodes, big tender lumps one on top of head & one base of skull.

    I felt mildly unwell with it & did not know what was wrong, but it bothered me more when I lay down & tried to sleep that night. I went to hospital A&E but the triage nurse trivialised it, but gave 2 Panadol. I gave up waiting to be seen as it was middle of the night. I saw my GP following evening, got diagnosis & needed antibiotics.

  • Hi Oathy

    I also get head ulcers. I get about 4 at a time and they can take months to heal. I am sorry you are suffering with so many as they are painful and a real nuisance. I hope you feel better soon and sending lots of hugs.

    Angela x

  • thank you for taking the time to reply. One thing that I really didn't expect is the comments from strangers. Most of the time I either wear a cap or hat but some days it just wont allow. the amount of people that have asked "is that catching" I even had one woman asking was it AIDS!!.

  • Hi Oathy,

    I've had these sores on my scalp before with or without flare or other symptoms present. I only get up to 4 at a time though, and you look like you suffer bad with it! I feel bad for you! There must be some kind of salve you can put on at night or steroid cream? I did notice that every time I get my hair colored, I will for sure get some around the nape of my neck, along the jaw line and neck. Some different irritants can set it off I guess. My doc used to tell me to spray perfume on my clothes only not my skin:) Didn't notice a change. Right now I've discoverd this am 2 big sores(same I get on my neck and chest) along my right flank and one on my inner left bicep. Hope the flank ones aren't the start of shingles!! Geez! I'm assuming you've seen a dermatologist? Second opinion yet? Just a thought, in my late teens while treating me for 'bad acne' which I developped at 11 yrs old, I saw a diff dermatologist because mine had passed away. He put me on accutane for 3 months. What did happen is that it brought out more sores beneath the surface, my skin would throb, but soon enough my skin was calming down and got super dry. Since then there has been a dramatic decrease in those "acne" flare ups. Now I know better because that"acne" wasn't really acne but related to BD because now confirmed positive, I've had symptoms since childhood. Lots of scars"white dots" left behind from all of those sores. But the point being I wonder if the accutane had anything to do with the decrease in skin sores? Good luck to you,

    Hang in there:)

  • hehe I love that user name nurse!!! hehe I think we have all met one or two of those.

    Yes Ive been on Pro topic/Elcon that seems the best combination only problem the pro topic with its toxic nature isn't really a good long term solution and once I leave it off the thing just goes rampant.

    really graphic picture of my backside. So please be warned I cant even put steroid cream there it hurts so bad and its been like this now 13 years basically.

    So finding something cooling for the skin would be amazing to be honest.


  • Too funny about the user name..cause I am a nurse for real..LOL! I am opposite of the username but kick in to Rachet style real bad when I encounter stupid or obnoxious:) I would say mostly was a nurse rachet when I worked a stint in a federal prison-way too many stupid ones there! Anyway about your skin, have you tried any lidocaine based ointments? Such as 'solarcaine' which comes in a spray or lotion? Usually used for bad sunburns. You may find it under a different name being in another country. Look in the suntan aisle at the drug store of ask the pharmacist. Anything with lidocaine base. I have here at home aloe vera gel with lidocaine for burns which is really cooling...see what you can find. Or if you know someone who works in a hospital...get them to swipe a tube of lidocaine gel:) good luck to you!

  • will 100% look for that. the nurses that call to the house are pretty good so will ask them about that.

  • Oathy,

    Other than the prednisone, have you tried stonger systemic medication? Topical lidocaine sometimes has alcohol in the base ointment, so it can sting when you apply it. Just seems like you have inflammation that is not well controlled and that may require additional systemic treatment...from the inside. I don't think a topical will turn off the amount of inflammation you have going on.

  • Hi - had this also on my scalp. I had a bioposy which has been helpful in supporting the Behcets diagnosis. 10 weeks of an antibiotic combined with Colchicine is what shifted it for me. Now if i don't take the colchicine I start to get the odd pimple back which is the signal aIneed to get the full dose routine in place. Hope you get some relief going forward.

  • thank you. that's one thing I haven't had done but well worth remembering they did so swabs to make sure it wasn't something infectious (like we all got the genital problems) But that's well worth a mention next time thank you :)

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