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Everyone (including my derm) told me dry skin was temporary on tane. But two years later I'm still getting terrible eczema. What's going on?

It's so bad! It itches terribly and its crusty and oozing all over my body. I'm completely covered!!

I don't know what to do! I moisturize my entire body several times a day. I've tried every cream and even steroids . . .

My acne was mild to begin with and probably never should have been on tane. But my derm only had me on it for two months at a low dose. WHAT IS GOING ON???

SOMEONE PLEASE HELP ME. THERE'S NO INFO ON THE INTERNET ABOUT PERMANENT ECZEMA FROM ACCUTANE LASTING YEARS!! EVEN MY DOCTOR IS SCRATCHING HIS HEAD . . .

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what soap do you use?

your soap needs to be ph balanced or at least claiming to be. i use dove. any other soap will make my skin dry.

what moisturizer do you use?

be careful if you are allergic to the moisturizer ingredients, it happens to me and it feels itchy all the time, i changed the moisturizer.

you dont need to moisturize several times a day, in my case i moisturise only at night or after a shower for best results. Putting more of the allergic ingredient on your skin will make it itchy.

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i read about eczema... 3/4 of it is caused by an irritant on the skin and simply removing that will make it go away. try to figure out what it is by not using something you use everyday, like soap or lotion or something, see if it goes away!

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Hi -

Check your soaps and lotions to see if they contain sulfates or SLS - even Cetaphil does! Sodium Lauryl and Laureth sulfates can give folks dermititis and itchy skin. I can't use face cleansers with SLS. For body gel, I use Aveeno, and though it has some SLS, it has other soothing ingredients that seem to balance it out. Also, you may wish to take Claritin or Benedryl this could help.

Good luck. I hope you find the culprit - let us know.

Yvette

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thanks for the tips. its not my moisturizer cause i've been using the same cetaphil cream continuously since accutane.

i cant even use any soap when i bathe. i cant even shower either. i have to take baths in pure industrial mineral oil.

i agree that irritants can cause outbreaks and that has happened in the past. but i use the cetphil cream on my face and body. and since my face is still a little oily i get no eczema there. so i know its not the moisturizer.

my skin is just super dry from tane. i did some research and although i couldnt find anything about people getting permanent dry skin. i read a lot about dry skin during the course. basically accutane stops oil and so the dead skin layer is not waterproof anymore. it also gets disrupted much easier.

i just dont know why im the only person in the world who has such dry skin over a year later.

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ok heres the deal:

accutane permanently shrinks the oil glands...thus, your problem makes sense.

the question is....did you have REALLY oily skin before accutane, or just a lot of acne?

because in my situation, I have very oily skin... so, though im only on day 3, i expect it to dry me up quite a bit, but this is a + for me.

for you, if you had not so oily, or even just normal complexion before the tane, it would make snese that your skin is super dry.

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thanks for the tips. its not my moisturizer cause i've been using the same cetaphil cream continuously since accutane.

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I've changed detergents long ago at the behest of my derm. I use hypoallergenic purex or arm and hammer. So its not that.

I take cold plunge bathes in oil/water. Showers (with the water hitting skin) are too harsh.

I use high quality satin sheets that are like heaven so its not that. I also turn all my clothes inside out so the softer sides are on the inside and the seams are on the outside.

----------------------

I tried auqaphor. It's ok, but just mostly petroleum so I've used cheaper versions like creamy petroleum, eucerin, or vaseline.

I've experimented with lots of different moisturizers off the face. Some work better than others. A few were mildy irritating. Basically I can use anything as long as its has little or no fragrances or acids in it.

Personally I like Johnson's baby lotion, Equate cream, Cetaphil cream, Sauve, and few of the knock off brands of these. The only thing I don't like is when moisturizers leave a cheesy build-up after heavy application.

Since I moisturize several times a day its easy to experiment. Basically I've learned that most any moisturizer is OK as long as its not a cheap dollar store no-name brand. Also I have to stay away from anything with fragrances in it.

Cetaphil and equate cream in the jar is by far the best. Though they are expensive. And Cetaphil leaves a waxy build-up. I usually use Cetaphil or Equate 1-2 times a day and exclusively on my face.

Oddly I've found that the Cetaphil lotion with SPF burns my face so I don't use that.

----------------------

The information on Accutane and its permanent effects on sebaceous glands is conflicting. Some sources do say its "permanent" and can even destroy oil glands. But "permanent" is a relative term since clinical studies usually have poor follow-up, and rarely extend more than a few years.

Of course there's the whole thing about "accutane is a cure in blank percentage of people". And they always go into statistics like "acne returns at one year for 1:10 people" and "acne returns at two years for 1:4 people". Which tells you that it has a prolonged, but diminishing effect on oil production.

Personally I think the degree and time of clearance is related to dose and length of treatment. I suppose at high treatment levels Accutane could have a "cytotoxic effect" meaning it permanently disables/destroys sebaceous glands (as well as permanently damaging the liver).

----------------------

My course was only 2.5 months:

Month 1: 30 mg

Month 2: 40-60 mg

Last two weeks: 120 mg

This is a relatively low dose, but then again my acne was mild (and laser induced at that). And my skin was only combination oily (t-zone, chest, central back). (In the end I discovered that all I really needed to do was restrict cow milk and dairy.) So it's possible that my reaction is so bad because it was like giving accutane to a person who already had normal skin.

I can say that the sensitivity of my skin has gotten better slowly over the last year. It's still only a slight improvement from when I first stopped tane, but it's noticeable.

For instance when I first stopped tane I would get an eczema patch just from scratching an itch on my arm. But now I can get away with that as long as I'm gentle. Now my skin can get red from scratching but not turn into eczema. This is a step in the right direction.

----------------------

Yet, even with the slow improvement my skin is still super sensitive. My derm is dumbfounded. And I can find no literature on why this would happen.

It's especially weird since I don't have any of the other Accutane side effects. I have no problems with lip dryness anymore, no eye dryness anymore, liver enzymes returned to BELOW normal levels, no muscle or joing pain, no hair thinning or dryness.

My nose dryness is gone and no more bleeding problems. The peeling palms and soles have stopped (only had that right after stopping tane). No nail brittleness and the skin has not cracked this winter on my hands/fingers.

I have no mucus or throat problems. No dry mouth.

It's mysterious how all these other side effects were limited to the duration of my Accutane course (or a few months immediately after), but the eczema and dry skin is long lasting . . .

----------------------

One other interesting thing:

Accutane cleared up the sebum plugs that I used to get in the pores of my nose, chest, and upper middle back. They were yellow and sticky. I used to squeeze them out by scratching with my fingernail.

I guess they would be called blackheads if I gave them a chance to oxidize. I've also heard them called "sebaceous filaments".

I also got them in the pores around my cheeks. On the cheeks they were mostly small bumps in the skin. I would squeeze them and they would squirt a string of white sebum like a can of silly string!

But Accutane got rid of these!! The ones on my nose did come back slightly when I started taking fish oil and flax oil capsules. Though they were much smaller, harder, and more granular (like sand grains) versus how they used to be (sticky goop).

They went away again after I stopped the flax and fish oil.

----------------------

Maybe this change is a clue as to why my skin is so dry and eczema prone. My skin is producing much less oil. And that oil it is producing isn't as thick and creamy.

I just wish there was a healthy balance where I could have non-oily skin, no acne, but also non-sensitive, tough skin.

I wrote a lot here and would appreciate any thoughts or comments.

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cortizone 10 i think its the name helps with eczema

talk to your derm if you are really concerned

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hmm well you are an interesting case, I guess your number just came up.

better for it to come up now then a bad accident or broken neck I suppose, just look at it like that :(

I was under the impression that it perma shrank the glands, but I guess I was mistaken...

anyways, good luck

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Last night I had to go to the emergency room. I was covered with eczema from the neck down: trunk, arms, hands, legs, butt, back, even genitals. They gave me IV steroids and some other stuff. Then I had to get a prescription for oral Prednisone which I'm taking for the next week.

Of course the ER doctor told me "I'm not a derm" and couldn't offer any insight into Accutane and eczema. He did say at one point that "every pore on your body is inflamed right now, except your face. You should be thankful for that."

I asked if he thought Accutane destroyed my oil glands. And he said no, because my hair and skin would be completely ashy if they were destroyed. So they must only be shrunk and producing less oil.

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Worst part is I'm on vacation in lovely Florida right now. But I can't even leave my hotel room. I cried all last night.

I'm glad Accutane cleared up my acne but it was not worth this severe eczema. I wish I did a lower dose!!!!!!!!!!!!!!!!!!!

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Another auto immune side effect from tane (your condition is due to your immune system mistakenly attacking your own body).... I have several long term side effects and i strongly believe nearly all long term side effects are due to a malfunctioning immune system. I am soon to try long term Oral steroids with a very slow taper to see if i can stop all my immune related side effects...

Basically we have to treate these side effects as lupus is treated. To put a patient with lupus into remission requires carefull administration of oral steroids.

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Careful Lamarr. Long term steroids even at lower doses have nasty side effects.

Didn't you have problems with stretch marks? You will get more on oral steroids as they thin out ur skin and prevent it from repairing itself from microtears.

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No i didn't have problems with stretch marks so much, i have a few round my arms from bodybuilding which i never had before tane, Nothing major though. To be honest stretch marks are very low down on my list of concerns lol. Long term steroids even at lower doses CAN have side effects. But i will not be taking them in the typical manner anyway. It is a form of pulsed therapy. Which allows you to avoid adrenal suppression to a greater degree...

Steroids are far safer than accutane IMO...

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Have you been tested for allergies?

I know someone who has a child with eczema which is caused by his allergy to wheat, egg, and dairy.

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Scooby, i think conditions like this that are induced by tane have nothing to do with allergies, in someone that has developed it naturally then sure, but not when a drug like tane has been ingested.... That is just my opinoin though and i know you are just trying to help...

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I agree with both of you.

Lamarr,

You are right I wouldnt be having this problem if i didn't take accutane. Although since taking it my skin has been so sensitive I've noticed that certain foods do cause acne and eczema (cow milk!).

Scooby,

You're right too. If I have dairy then the next day I get acne. I only noticed it since being on tane, but looking back at my life I can see that cow milk was a major contributing factor all along. I can go months at a time without any acne whatsoever as long as I avoid milk, ice cream, etc.

To a lesser extent I have noticed that milk also causes eczema problems. Though I haven't been as vigilant in my experiments to convice myself.

It's interesting that you mention eggs. I did a search on here for "eczema" and eggs came up a few times as a trigger. Like milk, they are also one of the most common allergens in humans.

Wheat is another interersting beast. I think there may be a link between bread and eczema since almost all baked goods have milk and eggs in them. However when I have my shredded wheat every morning it doesn't seem to cause problems (as long as I use soy milk!).

I will be cutting out eggs and bread now too. Will see if that helps.

By far though I think my biggest problem is dry skin. My oil production has plummeted. So my skin is sensitive to things it wouldnt otherwise be effected by: foods, clothes, bed sheets, detergents, friction, lack of humidity in my home in winter, etc.

The latter is definately the biggest problem. Low humidity in winter, combined with the heat being on 24/7 makes the air super dry. It's almost impossible to compensate even with a humidifier on all the time.

I came to Florida this week to try to get my eczema under control and it only got worse. I don't know if it's because it's too humid here so Im sweating which causes irritation or if it's something else.

The ER doctor said he thought it could also be stressed linked. Coming down here and not knowing anyone/unfamiliar environment and already having a moderate eczema outbreak could have been too much stress for my body.

Another thing I overlooked is the hotel sheets and towels. They are not what I'm used to. Very scratchy and lots of bleach residue which is super irritating to my skin!

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Accutanegaveme, Can i recomend you try cutting vitamin A right out of your diet for a few weeks? just see what happens i think you might be shocked. I know it sounds crazy when you read that people have to cut vitamin A out of their diet to feel better after tane. BUt unbelievably it does help....

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Wow. That's just what I was thinking Lamarr. Great minds think alike!

I actually stopped my multivitamin as of last weekend. It's only 70 percent RDA of vitamin A. But I also take a protein powder that has 35 percent RDA (and I take two servings of that a day).

So right there I was getting 140 percent RDA of Vitamin A. Not to mention the fruits, vegetables, and fish in my diet!

I know Vitamin A is stored in the liver and fat cells indefinately, unless it's needed due to a deficiency. So by running an intentional Vitamin A deficiency I can get it out of my system ASAP.

I've also been losing weight recently. I went from 20 percent body fat to 15 percent. And I am closing in on 10 percent body fat now.

-I wonder if burning off fat cells that have Vitamin A stored in them will increase the amount of circulating Vitamin A??

-Which in turn triggers dry skin and eczema flare ups??

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It is possible, Only people who suffer from these long terms effects will know what i mean. But one of my side effects is mouth ulcers. I have noticed when i avoid vitamin A i keep these to a minimum, soon as i begin to stray they come back. Now like i said i know that will sound crazy to people not in a similar situation (i thought the same when i read people saying they have to avoid vitamin A) but, try it and see and you will be suprised.....

It definently isn't a placebo effect either as i wasn't expecting it to help at all, but i know for a fact it helps me...

Edit: few little tips because i also workout, Avoid dark fish like tuna and makral (sp). white fish is fine. Also avoid most milk as it has the worst type of vitamin A added to it. You can get protein pwders without much vitamin A in them, which is confusing to me as they are milk derived but nevermind...

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I use a Trader Joe's soy powder for protein to make smoothies. It has Vitamin A and a whole bunch of others added to it.

I actually stopped drinking cow milk because I was still getting acne after Accutane. After several experiments with diet restriction I determined without a doubt that milk/dairy was breaking me out.

Mouth ulcers? Can you be more specific?

Personally I have a condition known as geographic tongue. It's basically sores on the tongue that change shape and move around. They look like land masses on a map because the papillae fall off inside the ulcer.

I only get these when I'm run down, sick, or really stressed out. Also I get them if I let my oral hygiene go.

I have a tongue scraper that I use twice a day. It's great for cleaning the plaque from my tongue. It keeps my breath fresh and mouth feeling cleaner. If I don't use it for a few days my geographic tongue ulcers will start to form.

I had this condition though for ten years before Accutane so it is in no way related to isotretinoin.

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