Author Topic: Dry skin, how severe it normally is and what helps?  (Read 536 times)

veleha

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Dry skin, how severe it normally is and what helps?
« on: July 23, 2018, 02:45:10 AM »
Hi!

I wrote earlier a topic about a sudden onset of dry skin for me. I have now lived with it 2 months and it seems to worsen all the time. I have read that it's not only the affected sebaceous glands but also that the top layer of the skin (stratum corneum) does not work well (or maybe it's related to the absence of sebum).

It's especially bad in my face, but feels all over the body. In just two months my face has lost it's fullness (I had extremely good skin before that), became dehydrated, sensitive and easily irritated. Enormous stress about this does not help. I never got redness before, but now after shower my face gets red patches and feels very tight. I try to follow an appropriate dry skin routine, hydrate with hyaluronic acid, use oils like almond and coconut oil, but the situation does not seem to improve much. When the humidity of air is great (over 60%) it gets a little bit better, but since it's this bad even in summer, I am afraid what will happen when the winter comes. There's constant flakiness on my skin and I am unsure if I should mildly scrub it or not. Make up does not spread easily anymore, I have to put lot of oil to make it spread. I am not sure if my skin is also thinning or is it just the loss of hydration that makes me look like I have lost pounds or something. The lack of luster is the worst, my skin looks and feels like it has zero oils and my finger do not slide on the surface anymore at all. I have always had dry skin type, but this is something else and feels so awful to touch my face. Also my lips feel weird, like someone said in another topic, they feel 'raw' and I need to lick them constantly which makes it worse. I have had dry lips because of dry mouth with Sjs before, but it was just normal dry lips, not like this. It's like my skin has no barrier anymore to outside stressors and I feel that I can't swim, be in the sun or wind or go to sauna anymore at all.

The overall skin on my body also feels really different than before and that makes me horrified to touch it. It's rough, not flaky, but gots very easily pressure marked from clothes and sheets. I can't carry heavy bags without getting deep pressure marks on my arms. Only two months ago this was not the situation at all. I do not know what causes this - is it dehydration of the skin or collagen breakage. Dermatologist I went to said that Sjs does not cause skin thinning but from this forum I have learned otherwise. Has anyone else with dry skin experienced this?  I have always looked much younger than my age, but now I am deeply afraid that this will accelerate the aging process and I don't think I am able to mentally cope with the situation.

My family says they don't see or feel anything has changed in my skin and it drives me crazy, cause I myself feel like complete different creature nowadays and suffer so much about this. I am also afraid that this will be worse and worse over time, even thought it's not so noticeable to others yet.

My hair is also very dry and nothing seems to help. I moisturizing treatment will only help for one day, the next day it's dry again and at the same time it says, you should not wash dry hair every day. I have read a lot about the helpful lotions around the internet, but I am just wondering is this kind of severity of the dryness normal in Sjs or a I experiencing something exceptionally difficult?

Joe S.

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Re: Dry skin, how severe it normally is and what helps?
« Reply #1 on: July 23, 2018, 05:19:47 AM »
Eventually the Dryness will become your new normal. My wife had a towel one end "dry" and the other end damp. To me, the dry end felt damp and the damp end felt wet. She tried to convince me of the way it felt to her. Living with me with this disease for as she has, and she still does not understand what I experience.

When you take a shower, you turn off the water, there is no beading on your skin but you towel down because there might be. I have tried many moisturizing lotions with limited success as they make me feel like I covered myself in automotive grease.

As we drove out to Portland, she used Chapstik because her lips were dry. i just wipe off the crust of dead skin build up.

Dry is your new normal. Try to find something that helps you feel as good as you can.
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Deb 27

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Re: Dry skin, how severe it normally is and what helps?
« Reply #2 on: July 25, 2018, 04:54:15 AM »
I've had periods of very dry skin as well.  Here is what I do:  I find that taking fish oil helps, at least 2,000 mgs a day. I use the Maxi Tears brand. Don't shower in hot water. Use very mild soap like Dove and when you get out of the shower, before you dry off, use some oil. I use Almond Oil. Use a body lotion with alpha hydroxy acids. I think Eucerin makes a good   lotion for extra dry skin with  AHA's. For hair, I have to also use oil on it before I shampoo, dilute my shampoo ( for dry hair) condition and then put smoothing serum on before it dries. I air dry my hair and don't use a blow dryer.  For the face, I use things for sensitive skin only or rosacea or it gets red.

I hope this helps some. I think it's about finding the right products for your skin/hair.  Also, you might get your thyroid tested. If you are low, that might make your hair and skin real dry.  I think I was lucky to have more oily skin to begin with. I think if you had dry skin and then got Sjogrens, it would be even more difficult. You might have to re apply lotion at least twice a day and run a humidifier in your home. I live in the very humid south.
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shaycoe3

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Re: Dry skin, how severe it normally is and what helps?
« Reply #3 on: July 25, 2018, 06:25:24 AM »
I experienced this also try dove sensitive skin and a non comedogenic cream lotions just seems to dry the skin more.

araminta

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Re: Dry skin, how severe it normally is and what helps?
« Reply #4 on: July 25, 2018, 01:33:31 PM »
I can relate to much of what you say, I think my face has changed a lot since this happened, though partly because I have lost a lot of weight.   I also look different because I can't wear eye makeup any more - I used to love it!

When symptoms started I began getting sores around my lips because of the dryness and now I always put Vaseline on them before going to bed, and  use chapstick in the day.  I would urge you not to keep licking your lips, you can develop problems that way, e.g. angular cheilitis.   Chewing gum will help with mouth dryness, and you can have Xylimelts at night.    All my skin became very dry and I had to see a dematologist about eczema and keratosis on my legs - he said my skin was crying out for moisture - which was never the case in the past.   I use moisturising cream on my skin morning and evening, and take flax oil capsules.  I think if you get into a good routine with these things you can keep the situation bearable.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

SjoGirl

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Re: Dry skin, how severe it normally is and what helps?
« Reply #5 on: July 25, 2018, 01:41:06 PM »
Are you by chance taking Evoxac for dry mouth? I found that this drug not only helped with dryness in my mouth, but the rest of me as well.

As for lotions, my dermatologist recommended Amlactin. It is more expensive than others, particularly the cream, but it works very well.
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quietdynamics

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Re: Dry skin, how severe it normally is and what helps?
« Reply #6 on: July 26, 2018, 11:34:11 PM »

Yes, I developed dry skin. I mostly use baby shampoo as I used it to clean my eyelids anyway. Recommended to lightly scrub to avoid lid problems that can occur with Sjogrens/dry eyes. I use an easy buff puff in shower or wash cloth to help exfoliate and used Dove soap with Shea Butter. And avoid hot water.. pat dry body and put light coat of virgin oil on which absorbs into skin.  Here is an article:  https://www.sjogrens.org/files/brochures/dry_skin.pdf

I drink 1-1.5 liter of water per day.
And I also can see my skin is thinner.

Here is more information. Remember we are all in different places on the disease spectrum. I have do have vasculitus and have had Purpura. And do not sweat much anymore which adds to issues. Prior to disease clear, carefree skin.  http://www.clinexprheumatol.org/article.asp?a=2401

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Hope some of this helps.
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veleha

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Re: Dry skin, how severe it normally is and what helps?
« Reply #7 on: July 29, 2018, 02:03:57 AM »
Thank you for your answers and tips. I will try those AHA acids. I believe Amlactin would be good also, not sure if it's on sale in my country, but could order it from Amazon. I am not taking any medications, my rheumy and dermatologists I have been to are not very interested in my situation. They only recommend different creams which I have tried but not with great success. i wonder if planqunil would make any difference in skin problems.

Right now I am really desperate about this. It feels much worse than my dry eyes or dry mouth. I still feel that my eyes have also suddenly got worse also and I am wondering if this could be a flare up. All this started after my trip to Italy I think. There was one very sunny day, when I was outside though I normally avoid sun quite much. I was protected with sunscreen but still believe that was the cause that triggered the autoimmune reaction in my skin. I have never had problems with sun or my skin before even with Sjs.

My eyes were quite tolerable before this, now they are very dry when I wake up and it's hard to open them. I wonder this new state is also permanent change for me. Also my throat feels dry every now and then and that was also never a problem before. All these new symptoms really stress out me. I have two years old kid, who would like to spend time outside with me and now I have to stay indoors all the time.

I am so afraid right now. I also feel that my chest and legs are developing kerastosis pilaris due to this. Did you find any help for those Araminta?


araminta

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Re: Dry skin, how severe it normally is and what helps?
« Reply #8 on: July 29, 2018, 02:36:08 AM »
In reply to your question, Veleha, I was given some very strong steroid skin cream by my dermatologist to clear up eczema, and for the keratosis (which he said was solar keratosis, though actually I spend very little time in the sun and doubt that) he used liquid nitrogen to freeze it.   I had that treatment twice without success.   Went home and started applying apple cider vinegar, and eventually that did the trick.   However ... recently the keratosis came back again.   Since then I've been applying coconut oil and that seems to be stopping it in its track, I'm hopeful it might clear it up.   However I wouldn't want anyone to blindly follow my example without being quite sure they don't have something malignant.

By the way, you mention having difficulty opening your eyes in the morning.   You should have some kind of lubricant to apply to them before you go to bed, and if they are difficult to open, try very gently pushing them back over the eyeball with your fingers - don't try to force them open in the usual way as this can cause erosions.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

veleha

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Re: Dry skin, how severe it normally is and what helps?
« Reply #9 on: July 29, 2018, 06:09:11 AM »
Ok, I think solar keradtosis is somewhat differentiaali of kerastosis pilaris. Latter is not so severe but still typical to dry skin. Has anyone of you noticed that your skin gets easily marked? I don?t mean dermatographia but just pressure marks? I also get lines under my eyes if I cry a lot which was not the case before. I wonder if this is due to some chronic dehydration of my skin or dryness itself. There?s also been an extreme heatwave in my country the whole summer so wonder if that has anything to do with it, when you constantly sweat.

quiger

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Re: Dry skin, how severe it normally is and what helps?
« Reply #10 on: July 29, 2018, 03:50:49 PM »
Veleha, when I read your post, I had a flashback of the days several years ago (before Sjogren's).  My skin and hair dryness were awful.  My doctor checked my thyroid and that was the culprit. But, I was also having some hair loss and some other annoying symptoms but the thyroid was my problem back then. Before then I'd had such nice hair and skin so the change was very noticeable for me even if noboby else thought it was a big deal.

This may not have anything to do with your problem, but it wouldn't hurt to have it checked out if you haven't already. We deal with enough dryness without any other condition adding to the problem. Good luck.

BTW my dermy has instructed me to use something called Amlactin. It is a lotion that used to be by prescription but isn't anymore. It is for extremely dry skin. I get it at Walmart where the lotions are but I have to look for it because it doesn't have tons of lotions in that brand. It is supposed to be fragrance free but it smells so bad that I put a little of my fragrant lotion on over it to hide the smell. I don't do that on my legs but I have to if it's on my arms. Also, it doesn't take much or it may feel greasy because it is not a fluffy lotion or body butter it's much thinner than that. It works so well, if you can get past the smell. :)

quiger
« Last Edit: July 29, 2018, 04:00:52 PM by quiger »
Check out the info on the home page  http://www.sjogrensworld.org/index.html

veleha

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Re: Dry skin, how severe it normally is and what helps?
« Reply #11 on: August 10, 2018, 02:11:13 PM »
Thank you, Amlactin really seems to be a good one. 👍🏻 I have had my thyroid checked and it?s normal. Still wondering the skin imprints I now suddenly seem to get very easily from a minor pressure.I wonder if it?s the due to skin dryness or skin thinning or both? I have heard skin thinning can also came with sjs.  :'( Right now my face seems to get this burning and stinging sensaation very easily and adding some cream sometimes helps, sometimes makes stinging worse. My hair is little t better now, don?t know the reason for that. If the skin would be just dry, it would probably be manageable, but now it seems to be dehydrated, easily irritated and weak at the same time.
« Last Edit: August 10, 2018, 02:30:53 PM by veleha »

markt

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Re: Dry skin, how severe it normally is and what helps?
« Reply #12 on: August 13, 2018, 05:19:59 AM »
Beyond Dove soap and various moisturizers, Rituximab has helped me on a systemic level with the dry skin. 

I noticed the oil return to my facial pores, and in some cases, the return of acne in areas of concentrated hair follicles and skin pores (which had become clogged).

This has been a repeat experience for me... the symptoms improved with each infusion.

- Mark
« Last Edit: August 13, 2018, 08:31:57 AM by markt »

Tiff123

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Re: Dry skin, how severe it normally is and what helps?
« Reply #13 on: August 13, 2018, 04:48:28 PM »
The lotion I always go back to is cerave daily moisturizing lotion for normal to dryskin

I also love a scent free aloe vera gel.

Dove sensitive skin foam wash for the body is great stuff.


I am very fair skinned and I am very reactive to most things. But my face can handle a ton for some reason. It's my body (mostly legs and upper arms) that are the culprits.
« Last Edit: August 14, 2018, 04:08:45 AM by Linda196 »

veleha

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Re: Dry skin, how severe it normally is and what helps?
« Reply #14 on: October 09, 2018, 04:32:45 AM »
Quick update to my situation. Two months ago I stopped using all the creams and serums on my face and switched only to jojoba oil, toner and shea butter at nights. This made the tightening feeling and irritation to go away and my skin felt and seemed much better. Still, especially after the autumn has arrived, my skin is still flaky in some parts of the face and it seems I can't use the foundation I am used to anymore it does not spread well.  I have couple of very small red spots on my face which burn when I touch them. They seem not to heal, no matter the of moisturizing. The skin on my body is not flaky or does not feel dry, but it feels kind of too sensitive.

My hair has also improved a lot, but now my scalp is little bit itchy and still some sections on top of my hair feel quite dry. I am frustrated because I still don't know if all these sympoms are from Sjs, or normal ageing (turned 40 this year) or perhaps the extremely hot and dry summer we had here. My twin sister's skin has also became more sensitive, more red and dry and she is healthy and does not have any autoimmune or other diseases. Dermatologists I have lately been, seem to report that my skin has surface dryness but is not exceptionally dry (which is typical to Scandinavians) Based on examination of my skin they cannot say if it's Sjogrens. But I don't feel things are as they were just 5 months ago. Some days I feel nothing is wrong and it's all in my head and some days I am sure it cannot be anything else than Sjs.

I am looking for a beautician who could examine my skin more thoroughly. I found one in another city who has experience of Sjogren patients. Maybe she could offer me some perspective on what is going on.