My skin is dreadful at the moment but, once again, none of the medics seem really interested. Having said that, at the moment I am 'breaking in' a new rheumy so I need to be fair to him, he's got 5 years of history to deal with! I think too that, in the grand scheme of things, the skin problems are seen as relatively minor.
I started off a couple of years ago with lesions on my chest - hard lumpy spotty things, always in the midline (GP pointed that one out!). Then there was a dreadful episode when I had a nasty rash beneath my breasts. I treated it as thrush - which it wasn't; my GP treated at as a Staph infection, even though the swab came back clear. At my next consultant appointment I was told that what I had suffered was very much a Behcet's problem.
Now the problem has moved to my face and causes me a lot of angst because it looks so ugly and sort of dirty somehow.
Around my nose and mouth I have red, bumpy patches of skin that look greasy even though my skin is actually quite dry (mature, shall we say!). Close up I can see the individual bumps, some have a small amount of gunk but most are completely dry. It is very sore, especially at the corners of my mouth, which are cracked and bleeding.
The other thing I can see when I look in the magnifying mirror is that each hair follicle has a tiny white plug in it. They don't look like your average whitehead, they are far too small for that. Because of the steroids, I have a lot more hair on my face than usual (it's not visible to the naked eye or the casual observer, but it's definitely there!). I tried plucking out the hairs to see if that would cure the problem. To be honest, I'm not sure whether it did or not but life's too short to spend it plucking hairs anyway!
I wonder if I should ask for a referral to a dermatologist or whether that is making too much fuss? And who do I ask for the referral - GP or rheumy? My old rheumy coordinated all my care but I'm not sure that this new one does
Sorry for moaning but I feel so fat and ugly at the moment and powerless to do anything about it.
Di
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devonshiredumpling
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It might be worth finding out if there is a skin care nurse attached to your GP practise. They can be extremely helpful and you may get an appointment sooner than you will with a Dermatologist, so you can get started with whatever is recommended. Referral to a Dermatologist is an excellent idea too, but do try and find one who knows about BD and who is prepared to work in conjunction with your other Docs.
I would suggest that you don't ever apologise. When you are feeling crap it helps to share and that is what we are all here for.
I didn't explain that very well! A skin care nurse can advise you on general skin care management, like which products to use for bathing and moisterising (some which are available on prescription) washing your towels, sheets and clothes separately to anyone elses and with specific washing agents, different cloths for your face and body - disposable ones are good for when things are really bad and you are trying to get them under control and using fresh flannels and towels per wash when things are stable can help. A Dermatologist can help with medication both oral and topical. It may be that you can get all this advice and support from a Dermatology without seeing a skincare nurse too, I suggested it only because it may get you started with treatment sooner rather than later.
It's horrible, I to feel like that. I was at my most depressed when my skin was at its worst, I to have the hairy face problem! Although everybody says you can't see them, hmmmmm I can!!!! Same with the weight gain.....!!!!
Increasing the steroids helped with my skin also hydrochloroquine seems to have kept the skin problems.
Hope you feel better soon. It's so miserable when you have no control over what you look like. I hate this feeling too!
My skin initially was my main concern. Lately it has been fatigue and pain in limbs. Way back >10 yrs ago(?) - I had a crop of something similiar to what you are describing Di on my face (don't want to scare you but they broke the skin fairly quickly). Now I know they were Behcet's lesions.
Since then, my treating dermatologist (and I) have decided that when I'm in a flare anything will make the lesions worse (pathogenic reaction) - this includes bathing the area with salt water. I've got a fairly large lesion on my arm and it has been treated for the last month with gentle washing under the shower and then dressing with vaseline gauze to keep it moist (it is healing well).
Hope that makes sense - you don't want to make matters worse. In my case they have always healed (albeit slowly).
Half your luck Anna - I love travelling but haven't been able to for the past few years.
Thanks, Les. Sadly, I know about them breaking the skin. I thought that was down to my skin thinning with the steroids Everything I've tried does seem to exacerbate the situation, so it sounds exactly the same as yours. I don't know what to do now - if nothing but time works do I need to see a dermatologist (we have no dermatology nurse at the local surgery)? Or maybe I should see one just to have this on record. Problems problems eh?
Same as Les, Anna. One of the reasons I moved consultants was that the previous one was a round journey taking 5 hours, which killed me. I was out of action for at least three days after each appointment. I think a trip to Turkey might kill me!
Sometimes practise nurses can advise on skin problems, even if they are not specifically skin care nurses (not the same as a Dermatologist BTW). These are the people who go out to the elderly in care homes, or patients who cannot visit the surgery for treatment and they will have experience and knowledge of caring for your skin, though not specifically for BD. This is about the only time I would recommend seeing someone who doesn't know about BD, simply because you may be able to see one sooner than you would see a Dermatologist, so you could get some useful advice while you are waiting for the Dermatology appointment to come through.
The hair folical problems sounds like follicultis which can be a problem connected to behcets. If you look at the Behcets Society Website on the fact sheets in this link
You will see one named "the skin in behcets disease" which gives you a whole realm of different skin lesions.
I have the follicultis frequently very bad on my backside and the dermatologists tried to take a sample of the gunk to diagnose it but it didn't seem to come up with any of the normal skin problems, some of which you have mentioned above.
In the end I have been given Trimovate Cream which is an anti-inflammatory, anitbiotic & antifungal mixed together, which covers all possibles. It seems to work for me but obviously I still don't really know what it is.
Thanks Andrea - Trimovate was what my GP prescribed but I wasn't very impressed with the results. Maybe I expected too much! Does it seem to you that half the medical profession know and sort of understand one set of symptoms whilst the other half has a different symptom list they work from?
My previous consultant was fully accepting of 'behcet's skin' but would not countenance that my persistent had anything to do with the disease! Yet, one of the first questions asked by my new consultant was how my headaches were and if I was managing them okay. He appeared to be totally disinterested in my skin lesions, saying something along the lines of 'well some medicines do cause rashes don't they.' It's like no ordinary rash I've ever seen and the corners of my mouth are so spilt (and were at that appointment) that I can't open my mouth wide enough to eat (never been a problem before, sadly!)
Thanks for your input - it's all gone into the filing cabinet in my brain to be analysed tomorrow when I am more awake.
Hi Di, I was having reactions (on a regular basis) at the site where blood was taken and one dermatologist said it was a rash from the bandaid! Now that I have diagnosed properly it all fits into place.
I was having these too with blood tests too. I photographed them with the date on and gave them to my specialist, who used these on file to confirm behects.
So if anyone else gets them it might help to photograph them and any other rashes.
I was actually doing a job for the pathology lab (teaching medical terminology) - they took photos because they had never seen that kind of a reaction before. Mine wasn't the sort of blister you see on the Behcet's photos - it was quite a raised rash about 5 cms in diameter (and very itchy!)
Hi - I also had trouble with hard painful lumps on my face. These have completely disappeared since being prescribed a maintenance dose of the antibiotic Doxycycline. I stopped taking this for two weeks whilst on holiday as the sun doesn't mix well with antibiotics and the lumps came back with a vengeance. Within days of taking them again when I came back from holiday the spots started to clear and they have all gone again. Hope things improve for you soon
Thanks Deb - when my GP comes back from his six weeks' summer holiday - yes really - I'll speak to him about some of this. I must admit to being a bit disappointed in him taking all that time off in one fell swoop It was him who diagnosed me and he's the only one at the surgery who has any understanding at all about Behcet's. This has left me feeling very vulnerable and, thinking about it, that might be the reason for my current state of health
I have just recently started using Tesco's Baby top to toe wash which apparently is suitable for new born babies. I use it as a shower gel and it is very reasonably priced. It doesn't dry out the skin at all and you can use it on all your bits as it doesn't sting. I even wash my face and eyes with it.
God I sympathise with you!! I might be late replying to this but I have had my fair share of skin problems. when I was doing my thesis for college my whole face blew up....and I mean blew up! It was red, rashy and swollen ( I looked so attractive !)
I did not leave the house for 2 weeks and was on antihistamines and steroids (both cream and tablets). Thankfully the antihistamines made me so drowsy that I just slept the whole thing away, The steroids do make my skin thin and it was so delicate.
I have a cream called 'Fucibet' which is amazing (topical steroid)! I also got Dermovate at one stage and the usual Prednisolone tablets. Now I do not need anything but if I do get stressed at all; a rash will instantly appear. It is amazing; I had to repeat my thesis because I lost weeks of writing and when I went to hand it in to college I instantly rashed up.
Hope you get it sorted because apart from how it affects your self esteem; it is uncomfortable! I used every face wash under the sun and am now an expert on face products. I now use Dermalogica (the sensitive range) and rarely have skin problems (only when stressed and not to the extent that I had before),
Devonshire, We (mother of teenage girl) are dealing with periorificial papular + pustular sore red skin, cracked mouth + eye inflammation - it seems to flare according to stress, wheat/sugar, premenstrual, sun, who knows.
We can usually maintain well on Dermol 500 - benzalkonium chloride 0.1%, chlorhexidine dihydrochloride 0.1%, liquid paraffin 2.5%, isopropyl myristate 2.5%. This combo is easily available OTC now from pharmacist under other brands.
But in flareup, we are controlling with: Zineryt (erythromycin) in a long course (advised 6m, but using more like 2/3m), or if it's bad, dotting on Fucidin (fucidic acid).
We have the full arsenal - steroids, retinoids, antibacterials metronidazole, azelaic acid, Trimovate as above - but since some of the systemic autoinflammatory reactions seem to have been caused by interventions like oral antibiotics and possible steroid eyedrops, we actually use minimum gentle intervention for control on the face so as not to run the risk of upsetting the immune system even more.
Her skin loves basic honey and beeswax base moisturiser - fast calming effect - but hates perfumes, chemicals, sodium lauryl sulphate etc. Shampoos cause problems (even baby senstive) except organic paraben free eg Avalon or Holland and Barrett manuka range.
We have dermatologists but they've just been good for prescriptions, no understanding of hypersensitivities. The above mostly works for us.
Thank you so much for this mermaid. I have used Zineryt successfully in the past but for some reason the GP doesn't want to prescribe - it could well be something to do with interactions with other drugs I suppose.
Funny you should mention the chlorhexidine (which I know from a past life is just an antiseptic cleanser - it's used to scrub up with in theatre). In desperation for the past few days I've been using an ointment prescribed for inside my nose where I have a perforation that tends to bleed and get infected. I've put it on the affected area and I think there might be some improvement. Difficult to tell because it is soooooo bad.
Anyway, this ointment is chlorhexidine and neomycin in a peanut oil base. Now, as Zineryt is a mycin and worked I suppose it makes sense that the neomycin works... but, there might also be a drug interaction problem I suppose. Oh, dear! Tis a good job I enjoy research eh?
I think I might make myself a honey and beeswax moisturiser - is it normal honey or Manuka?
She (age 15) likes the manuka honey range from naturesgiftuk.co.uk/ but can't tolerate anything else. Beeswax goes on lovely but we've not made our own yet - love to know how to do this. I found out about the manuka honey/beeswax combo from the rosacea forums. Honey is antiseptic and antifungal (eg Medihoney) but sticky! For relevant info, she is Behcet's genotype but not diagnosed for sure. But we seem to need beeswax/honey moisturiser to help the skin barrier, helps restore red flaking, open lesions, calms things down. I can tell when she hasn't used it. Even after daily Dermol, even tho it's supposed to be used as a wash/moisturiser.
Hope some of this stuff works for you. We are early days with this. Have you found a helpful dermatologist?
Not yet, as far as dermatologist concerned - I've never asked for a referral because I've managed to manage (if that makes sense!).
As far as making skin creams is concerned: some years ago I made quite a lot. Once I unearth my recipes I'll pm you - I'm not sure about putting it on the open board because I don't want to appear to advocate something that is only tested on me!
Ooooh, thanks v v v much. I've been trying to work out how to make our own beeswax base moisturiser from the interne because we have to eliminate all perfumes, additives etc to minimum.
We are steering clear of derms xpt long-term follow-up. We've got 3 on the go and been referred to no.4 - but after 4y we have had little sense out of them, inc Tony Chu. The problem is they dole out steroids, retinoids, antibacs without any understanding of systemic effects and risks for autoinflammatory disease, or interest in eye or other systemic symptoms, or interest in what steroids we are using in the eyes, saying rubbish like - 'there's no absorption, you're only dotting it round the mouth'.
You know as well as I, sounds like more so, how this is not good enough x
Not good enough at all, mermaid, the sad thing about this is that the 'good guys' - those medics who really do try their best to understand our issues - get tarred with the same brush. I may be naive but I'm hoping that this 'getting together' of interested parties will lead to a greater exchange of information at all levels and more recognition of BD. I'm certain that all rare conditions have these problems.
In a previous life I did quite a bit of research concerning health issues and medical management and, although these skills are rusty and my brain seems to have developed a black hole, I've used what remains of my knowledge to explore the field of public and professional perception of rare medical conditions* with particular interest in how sufferers/carers of these illnesses raise their public profile. Nada, zilch, sod all!
The beauty of this particular community is that it is hosted by the BSS, meaning that information shared here has a chance of being picked up by the medical team. Well, that's what I hope anyway!
I've gone off at a tangent; I only logged on to ask a fairly superficial question and look what you've got me doing... Good grief!
Yes, Devonshire. I am sure the 'getting together' will happen, esp when docs can communicate by secure internet and medical records are accessed throughout the NHS.
I'm loving the new Centres of Excellence which are outside the CCG drug budget - hope all rare diseases get this funding. I see hope too x
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