Absolutely panicked - long-term cortisone use on face

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Hi everyone. I've been reading up on SSS (Sensitive skin syndrome) and topical steriod withdrawal, and have truly worked myself into a panic -- I'm hoping someone on these boards can help.

Here's my story: I saw a derm four years ago with small, whitehead-like bumps on my chin, which he diagnosed as perioral dermatitis. He then gave me a lotion to use on my chin, which was hydrocostisone + metro. I used it for three years, and it kept the rash at bay.

I realized the effects of longterm cortisone use a little over a year ago, and stopped cold turkey. At first my entire chin area was awful -- red blisters, bumps, pimples, you name it. Derms had me try four different antibiotics, numerous creams, you name it -- EVERYTHING irritated it. Since then, I've tried sulphur, face oils (coconut, tea tree, almond, etc,), all-natural soaps, masks, apple cider vinegar... nothing helped.

Here's where I am now: the use of ANYTHING other than water makes the rash flare up. I kid you not, if I try the most sensitive of lotions or face cleansers, I wake up the next am with perioral dermatitis bumps and a red, inflamed chin.

From what I've read, steroid withdrawal should last 10-30% of the time you used the steriod -- and I'm well past that. My chin is currently a reddish color even if I use only water, and the fact I can't use a cleanser is not helping with the clogged pores and occosanional zits I get.

Long story short, does skin always heal from long-term cortisone use? I didn't experience the flaking, flares and spread ofthe rash others seem to have when they stopped cortisone. Instead, I simply can't use a single ingredient on my face, and my chin seems to be permanently red, one year after my last application.

I could really use some advice here. Derms have been unable to help -- they only want to throw more meds at me. Has anyone experienced this?

Thanks so much.

Kimberly

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  • Posted

    Hi Kimberly, the 10-30% of usage time is a rough estimate and it can take longer so you may well still be affected by cortisone withdrawal. This is often true of shorter term users like yourself - it's almost like the body takes around 18 months to improve significantly, but sometimes shorter, or longer. Not everyone goes onto having spread and flaking, the withdrawal can be confined to the area where the topical steroid was used. Given enough time, it seems that the skin normalises from ts use - often the skin is very sensitive throughout this period and can tolerate very little. Hang in there.
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  • Posted

    I have had a very similar experience. After years of trying chemical products to get rid of my skin which is damaged from years of acne and eczema, especially round my mouth, chin and eyelids as well as on my body.

    I have started looking for more natural ways to help my skin. I randomly came across Caurnie soap at a trade fair I was working at. I bought a nettle soap and the nettle moisturiser and it literally cleared my skin up over night. All I can say is it's AMAZING. I want to promote this to everyone who suffers with thier skin; It's a godsend. Please try it out - _____

    Would love to know if it works for you!

    _____

    Patient Moderator Note: I have removed multiple URLs (links) from this reply as they were unsuitable for inclusion within these forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

    patient.info/forums/discuss/private-messages-226361

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  • Posted

    Hi Kimberly, It is so frustrating that the lotions and potions we use to fix one issue can cause another! It seems you may have become sensitised to the cream. Think you may have to go cold turkey and allow your skin to heal naturally.

    I used to use a lot of creams and serums and all sorts to clear any sort of blemish or dark spot or anything on my face. Plus wore a ton of make-up. It was almost a never ending cycle of product use and skin problems.

    I finally decided to just stop using so many varied products and just stuck to the very basics and all natural brands too. A lot was going on is my life at the time, so, I was stressed and anxious. This also affected my skin.

    In a  way, I had to detoxify my skin both in and out. It took almost a year. Today, my skin couldn't be better. I eat right, have a simple cleaning, moisturising and make-up routine.

    Yes, I do have the occasional spot, dark spots e.t.c, but I just leave them alone and stop fussing over every facial blemish.

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  • Posted

    Hi Kimberly, I am going through the exact same thing you described. I used desonide on a small part of my face for 13 months. I have been off steroids for 2.5 years and that part of my face is still red and irritated. It says here you posted this a year ago. I am curious to know how you are doing now.

     

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  • Posted

    Hey Kimberly im going through same thing i have some recent studies i dug into on what helped me dramatically get rid of the redness. Now theres really two main doctors in the whole world that have been known to specialize in this. One in California Dr rapport and another Dr in China. Theres a support site for people going through this its call itsan.

    Well i conducted my own analysis. For me i used only a mild steroid cream on face for about 7 years. The redness went away on face but then these red spots on arms started spreading. Which was weird because i rarely applied to those areas of my arm. But thats the whole downside of topical steroid withdraw is that it spreads. 

    pretty much whats happening is you just have to let your own body heal itself so it wants to go through withdrawals and start spreading throughout the body. 

    But when you look into this, you see people that heal within 6 to 9 months, then you hear people talking about where its taken them years.

    Well for me it just seemed these spots on arms weren't getting better. And on face and neck even though not red it just seemed the skin felt tight and uncomfortable. I was like something doesn't make sense.

    So what i literally did is i went on that site and i open up an excel sheet i put all the people that healed with in 6 to 9 months in one column and the ones that took years in another. then next to each person i put what they posted during there healing process as what they think contributed to there healing.

    SOMETHING INTERESTING I NOTICED:

    the people that healed the quickest seems like almost all of them also stop moisturizer and applying everything to there body. And i mean literally never moisturizer once. They all said even when your lips are chapped or skin is dry JUST NO moisturiser. Theres actually a thing called moisturizer withdrawal.

    well what i noticed for me the parts on skin that didnt seem to get better where the parts where i kept applying moisturizer to help with the flaking. well the dr in china recommends no moisturizer he feels its one of the biggest healing factors going through steroid withdraw. The American dr said it doesnt matter.

    But back to my analysis. The numbers dont lie. Everyone that seemed to heal the quickest stopped moisturizer the ones that took the longest to heal kept applying.

    Now they warn you first couple weeks no moisturiser your skin is going to crack so bad its going to be flaking and falling off. So i decided what the hell why not try it. It was during holidays for me so i tried it for a week.

    First week yes my neck was so cracked i couldn't move neck felt like i was getting over severe sunburned. But then OMG after 3 days no moisturiser felt like all my natural elasticity came back Completely no redness on face and neck.

    For arms they were spreading like i said really bad the red areas but then once stopped moisturiser they cracked bad but its almost like it stopped spreading the areas. Another 2 weeks in arms almost looked cured, then after three weeks completely face no more red or cracked and just still dry areas on arms.

    All i can recommend is if your going through this condition stop moisturizer and try it. yes it will look bad and flaking but i had no more pain, no more burning sensation the flaking looked bad first week and still looked dry but i worse sun glasses so yes appearance and going out might suck for awhile.

    But i took the attitude okay give up social life for a month or have to deal with this redness off and on again cause of steroid withdrawal for years. I choose just go through as much pain as possible and just get it over with. Stopping moisturizer was the best decision i made.

    A lot of members that have this will say it doesnt matter use moisturizer if you need to but to me it seems crazy saying that cause it still seems like there going through it. So why not just try it.  

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