Hi, I am a newbe who is at the end of here tether

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I have suffered from contact dermatitis on and off for about 40yrs.  For the last 20yrs I was told that I had pompholix eczema which only affected the palms of my hands and soles of my feet.  Over the years I have been given a shed load of creams and lotions and tablets but nothing seems to work long term.  I had another patch test done on the 15th Aug and since then have had a severe flare up on various parts of my body (tops of feet, legs below the knees, arms, bottom lip and hands).  The result of the test show mild allergy to Nickle but severe allergic contact dermatitis to both Compositae (Asteraceae) and Ethylenediamine Dihydrochloride.  I have been left hanging by the hospital with an assurance of an appointment with the dermatologist, when I don't know, but in the mean time I have no idea what to use to eleviate the swelling, cracking and itching.  I would love a good nights sleep!  Does anybody out there have any suggestions PLEASE.  Has anyone else on here been told they have both of these allergies.

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6 Replies

  • Posted

    Do you use your creams daily? weekly? etc and have you been on those creams for many months to years? 

    If so you could actually have a hidden underlying condition called toprical steroid withdrawl syndrom. Or something called topical steriod induced eczema. 

    If you have used creams forever, then more and likely thats what you have and the bulk of dermatolotgist and doctors dont even know much about it. Its something that has been in the main light just recent even though discovered over a decade ago. pretty much long story short, only couple drs in us know about it and they were drs at a university and kept getting all these sever cases of ezcema patients to them. After lots of testing , come to find out they looked back at all these patients medical history and sure enough everysingle one of them used some sort of cream that had steroids in them. And these creams are prescribed like nothing by drs and everyone with skin problems pretty much uses them. 

    Well these drs have discovered whats happening is the body is getting addicted to the creams and shutting off your bodys natural rescourse or something like that. Problem is these creams have been preseribed for decades and up untill now is this topical steriod withdrawl starting to become more known. 

    So new drs today dont have a clue cause they feel "oh those creams cant do that" well with my skin condition i realized thats exactly what im going through as soon as i would stop creams i would flare up so i would go right back to creams asap. But something kept telling me this cant be natural i cant rely on these creams... so something told me maybe its these creams making it worse and not letting my body heal. 

    So bad part is if you do have withdrawl syndrome, the cure is pretty much no more creams and suffer through all the flares ups, cracking on skin, flaking etc. and it takes a super long time some people take up to 1 to 3 years. Im glad to say im on that last part of my withdrawl, i still have little flares ups on elbows just little on eyes, but it was a brutal journey and i doubted it i was thinking maybe im worse case patient. But i trusted all the forums and research about topical withdrawl that you have to keep on going, let your body heal on its own and it will, you have to just stop the creams and suffer. So i had ups and downs, weeks of swollen cracked skin then boom it would disapper then boom come back couple days later it was quick ups and downs for almost 10 months then at 10 months mark it was like omg i can see clear skin it felt better then before i used creams, then when a little flare up came it was nowhere near like before, like it looked like it was dramtaically less irriation, just like you see a normal rash heal, or an injury like you fall down and you can tell your body is healing. 

    Just do some research on topical steriod withdrawl syndrome. Now that being said the only thing i say that it might not be withdrawl syndrome is because you tested your skin and it did come back that you do have allergice reation and contact dermatits.   

    The vast majority of people with topical steriod withdrawl syndrome when they go get skin allergy tested it all comes back negative, meaning they dont have contact dermatist, they dont have allergeys thats what threw these doctors off at the unvisersity years ago because all these patients came back with no allergies and decided to look into there medical history and sure enough they all used creams. 

    So in your case you might have a combination of both steriod withdrawl and real contact dermatist. 

    I know its hard to accept of just dont do nothing and let your body heal on its own but hear me out on this last part.... 

    When we i and all of us face an issue whats first thing we do we overcomplicate everything!!. So what i do is try to look at everythying in a SIMPLE manner and that goes for the body to. 

    So what i mean by simple? I thought okay years ago like in the 50s and 40s i would look at all my grandparents photo albums and the one thing i would alwasy notice is why the hell did know one have skin problems??? not even red it seems in there cheeks or one zit. 

    Whats changed? creams, ointments, this and that crap, pills etc. 

    So looking into things more simple number 2?  I thought to my self what happens when you get a little rash, or irriation cause your boots or shoes were rubbing against ankles, or irriation from rubbing against something to long while doing yard work..?? well we just wash it , then eventually dont think about , then we think less about it then it just goes away all on its own..? 

    Same thing if we get a bruise or a cut . It all heals on its own eventually. The only difference is some people heal fast others take a long long long time. But the point is are bodies eventually just balance out on there own. So thats how i decided to look at it. Dont apply crap and let your body suffer and get worse then it will get better. Just like a bruise what happens, turns a little dark, then gets dark as black then freaking dark purble blue like omg what the hell happen , then what happens it starts fading and fading and fading and the body balances it out. 

    I know this aint a quick help solution. For quick help vasoline does really help, and its bs when they say dont use vasoline for dermatist or ezcema, thats recently been proven not to be bad. But even vasoline to me your body gets addiceted to it and as soon as you stop, then bam cracking on the skin. Your body got addicted to moisturizing. Just like chap lips, you use chapstick daily and daily and stop lips hurt and crack, but if you wait it out eventually they go back to normal.

    This is all meant to be motivational and give you a postive YES as in i truly believe you will HEAL all natural my friend! and i really hope you do and can beilive in all this!.

    All the best!  

  • Posted

    To improve your condition you have to avoid any known irritants and allergens at any cost. Regarding Asteraceae the only thing I can suggest is to take a shower after doing any pottering in the garden. I am allergic to some plants and if I don't follow this routine I start itching all over my body after mowing the lawn. 

    I have mentioned two links in a private message that detail where ethylenediamine is found. Unfortunately, it has been used even in medicated creams as a preservative and/or skin sensitiser. 

    It is very important to scrutinise the lists of ingredients of any product you are using including shampoos and soaps. It is best to avoid any creams or moisturisers that do not have the complete list of ingredients on the packaging. 

  • Posted

    Hi germ.

    Firstly, you're not alone.

    Now regarding nickel allergy, please look into systemic nickel allergy disease. It's diagnosed via patch test exactly like yours and then trial and error. Basically it means it's not just skin contact, it's ingested too. So you need to avoid high nickel foods. I have this, lots do. Low nickel diet either lowers or resolves their Excema. Or people like me who have anaphylaxis. It's not only food, cooking equipment like pans or cutlery, tap water, medications, etc.

    Secondly, you say you've used creams. Have you used steroids or oral steroids? If so please look into TSW/RSS (topical steroid withdrawal syndrome/red skin syndrome) Dr Rapaport's site is helpful especially his white papers for your doctors, although please bare in mind it's his specialty, but also mentions things he's not specialised in like he says food allergies don't manifest in the skin. There's also several groups you can join which are invaluable. People can advise and console.

    The experts say in TSW the skin can't tolerate anything. So its zero therapy, moisturiser withdrawal (including anything topical, creams, oils, anything). For me also pressure dressings helped but this is person by person depending on your ooze. Not washing also helped me.

    Next, as you're dermatitis is contact, you're best of doing moisturiser withdrawal. It's hard but cuts out the allergy reactions. Also get more patch tests and PRick tests. And keep a journal, literally note everything, what you do, where you go, which room you sleep in, clothes/bedding, who you're around (you are exposed to their products too), what you eat, everything.

    Lastly, well done for reaching out.

    Let us know how you go.

    God bless

    • Posted

      I should say separately, you could be allergic to the steroid itself which is a separate matter. Steroid allergies notoriously react late. Some a month later even two after exposure. When did you have your patch test? Keep an eye even if it's weeks later.

  • Posted

    I have learnt from experience over the years don't put anything warm or suffocating on your skin best thing for inflammation is cold compress and once you have the swelling down then apply which ever creams will work for you to help heal the skin. Antihistamines are the best for the itch and you can also try the kind that make you drowsy to help sleep and see your doctor about something like larazapam for sleep. When it comes to creams though it's a matter of trial and error but one thing I've learned is so not use them if your skin is inflamed because it's suffocating and will just aggravate it more.

  • Posted

    I also use a shampoo called sebitar in the shower you can use that all over your body and it has like a antihistamine type relief to it while your in the shower. I swear by that. It's amazing for me. It's all I will use. But of coarse everybody is different so you won't know till you try it.

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