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Skin Rashes and Sjögren's

Skin rashes most certainly occur in the setting of Sjögren’s. As opposed to many of the other autoimmune skin rashes that I see in my autoimmune dermatology clinic, there are no rashes that are specific for Sjögren’s. In other words, I cannot look at a rash in a Sjögren’s patient and immediately tell them that they have Sjögren’s. In comparison, I can often look at a lupus rash and tell the patient they have underlying lupus. That being said, Sjögren’s patients exhibit a variety of skin rashes that are important to recognize and know when to see a board-certified dermatologist.

By and far the most common skin conditions associated with Sjögren’s are xerosis, or clinically dry skin, and eczematous dermatitis. These are caused primarily by barrier dysfunction of the skin. Gentle skin care practices and liberal moisturizers are the best way to prevent these common skin eruptions. When caring for your skin you should take no more than one short, lukewarm shower per day. You should remain in the shower for less than 10 minutes. Soaps like Dove sensitive and VanicreamTM, can be utilized as they will not strip your skin. If a wash cloth is used while bathing, it should be limited to areas that give off body odor like the armpits, genital, and buttock areas, in order to not disrupt the skin barrier. Immediately after getting out of the shower, you should pat dry and then apply a moisturizer. Ointments are the best moisturizers followed by creams. Lotions are not typically moisturizing enough for patients with Sjögren’s. The best ointments are Vaseline® or Aquaphor®. If an ointment is too greasy for your taste, cream moisturizers like CeraVe®, VanicreamTM, Eucerin®, or Aveeno®can be used. For itchy skin, Sarna Original lotion can give immediate relief especially when stored in the refrigerator. If scaly, dry skin is present, utilizing moisturizers with lactic acid, urea, or salicylic acid can be used. Examples include: AmLactin®, CeraVe® SA, and Eucerin® Roughness Relief. If your rash is not responding to moisturizers and gentle skin care practices, a prescription corticosteroid cream or a steroid-sparing anti-inflammatory cream may need to be prescribed by your physician.

If you develop a purple-to-red rash that does not lighten, or blanch, with pressure, ulcerations of the skin, or a purple net pattern on your skin, this should prompt you to see a dermatologist for evaluation. Rashes that are associated with purpura (blood spots) can represent vasculitis, an inflammation of the blood vessels. Although these rashes are not as common as the ones discussed above, they are important to recognize in Sjögren’s patients and should be seen quickly by a dermatologist.

Natalie Wright, MD, FAAD

This information was first printed in the Foundation's patient  newsletter for members. 


— Dec 1, 2020

I am desperately seeking a dentist. I was seeing a Donated Dental dentist and the coordinator who sets patients up with dentists decided I had more work than "normal". She stopped the dentist before I was done. Since, I have have 3 teeth break off and my entire bridge that holds 4 teeth break off
Immediately, I had a crown fall out. She refused to let the dentist repair just the crown.
Now I am unable to eat much or open my mouth at all.
I'm disabled, so my income just covers my mortgage and bills.
I have been in a very dark place since all of this.
I live alone with my cat, but I am embarrassed to be seen.
It's also painful to have what is left of the broken teeth along with my dry mouth.
I don't know where to turn for help. My Sjogrens is difficult alone.
Do you have any recommendations?
I would appreciate anything,
Sincerely, June Tousignant

I'm sorry. I have been having new health issues. Now my skin.
I am afraid of what is next.
I haven't applied for Medicaid. I have Medicare and I wasn't aware I would be eligible for both.
This disease has just been too much for me.
Michigan has a shortage of Rheumatologists, so I am lucky to see my doctor once a year.
I'm seeing a dermatologist for my skin. She is putting me on a biologic.
I will contact my caseworker and see if I can apply for Medicaid also.
Thank you for your suggestion.
I hope your having a summer you can enjoy.

I asked my Doctor if there was a clinic associated with a Dental School. They have really helped me and have provided care at a discounted price. I have only 21 teeth left and have broken teeth at the gum line and what is left are caps and crowns with root canals. Hope you get help..

— Feb 25, 2021

I am a Navy Veteran and all of my medical needs are handled by the VA Hospital except for dental. Because I have Sjogrens they will allow them to extract the broken teeth but that's it!. For dental work at VA you must be 100% disabled military related. I am now missing 5 teeth and have two more that need to be pulled. Already it makes it hard to chew food which makes it harder to digest it properly. That causes other medical issues. My business has closed since Covid. Just surviving. Please I need help!

Hi Steve,
I had bad experience with Donated Dental services, but you should qualify.
They have dentists who volunteer in most States.
They will out you on a waiting list, but it's worth it. You see a dentist who is supposed to fix everything including cleaning
When they release you, they are supposed to put you in a position where you don't need any dental work.
They work with labs that also volunteer their time and expense.
I hope this helps.
Sincerely, June

I have such bad teeth that I need a full set of implants. Dental insurance is useless when you need a prosthodontist and an oral surgeon. They don’t even take insurance because they know it’s not covered and don’t want the hassle. I’m challenging them on that because the surgeon

I have recently (4-5 years) had my teeth just seam to crumble. I had 2 caps (Which I ate) pop off & those 2 teeth break & what's left are very sharp often keeping a cut continuously on my tongue and frequently biting my cheeks. Plus I'm always getting thrush, at times it's been so bad that I've used ACV as a mouth wash (I HATE VINEGAR & for me to do that it has got to be bad). If you have thrush & get desperate bc it's a holiday or weekend I highly recommended it, as it's a wonderful feeling that NOTHING rx'd has been capable of doing but you can feel it sloth off (terrible description IK but it takes it off your tongue, teeth & cheeks completely removing that fuzzy feeling so much so that things no longer slip & slide around & your teeth will hit & clunk Into each other). The most recent tooth to break was one rt up front & that happened rt around when ppl were being told to stay home due to COVID & of you had to leave wear a mask. I wear a mask faithfully mainly to keep ppl from seeing my teeth (ppl think you have teeth they treat you differently. IDK if I just think that or if they really do as meth is petty ramp in my area & state ( & I feel & see judgement in ppl when they talk to someone w missing teeth). I just turned 45 in April & need a complete set (upper & bottom teeth). I have an irrational fear of the dentist & need supervision to make sure I don't run away (which I have done on numerous occasions) when waiting in the office & require sedation just to pull a tooth but I was told by a dentist during one of these procedures that dentures would not work for me as you need to be able to produce saliva to be able to hold them in & I can not. That I would need implants which I had priced at a popular place aired on TV commercials & YouTube and with 2 dental insurance (1 through Medicare part C & a roommate added me to their dental insurance through her work) 36-40,000. I am now attempting to get them covered through Medicaid under medically necessary (which I fully fall under) as dual eligible with 100% subsidy (or also known as poor & sick as hell). I currently have been battling an infection in the front tooth which I think is trying to run up my nose to my sinuses (lupus ate a hole in the cartilage of my nose when I was 14 & I had a deviated septum on my rt side that required surgery as I had an impacted infection that the doctor had to "chiseled out" his words. If you have Medicaid I recommended trying them first as my research says you are more likely to be aproved through them then Medicare (as they go out of their way to explain how they DO NOT cover dental unless under tumor or for chemo and radiation). I hope I was able to help someone else, I also hope I am able to get this all approved through Medicaid & if so I will start spouting out very loudly exactly how I did & how others can too.

Has anyone tried the Perscription pills for creating Saliva (Pilocarpine or Cevimeline)? I hate that they make me sweat and then my Mouth creates foam when I take one. But Burns when I don't take one. Ugggg

Yes i tried Pilocarpine, same issues, sweating, and foam in mouth. Gave it up and just use a dissolving mouth lozenge which also has something that prevents tooth decay.?itcworks pretty well.

I use pilocarpine during day and ACT llozenge before bed. Works like a charm all night. I feel so sad reading other's stories. Hopefully there will be a new treatment approved soon and we will all be in a better place. God Bless.

— Dec 12, 2021

I'm an active well preserved 73 yr old woman, but have had a rash since February when I got first Pfiser Covid vaccine. Dermatologist first diagnosed as rosacea on face from mask and psoriasis on arms. Rash continued, moving around upper body, sometimes legs and was then thought to be insect bites. No bedbugs or fleas, but maybe midges from walks near lake? Dr. finally biopsied in fall and not finding insect cause, referred to my GP who took blood tests and found Sjorgen's antibodies. Just finally saw a rheumatologist who is putting me on Hydroxychloroquine. I have already been seeing knee specialists for sharp siezures in rt knee, have lots of indigestion (gerd )and wake tired despite good sleep, really tired by afternoon , which I used to joke was maybe l.t. covid from a covid like siege I had 1.2020. But is it unusual for Sjogren's to mainly manifest as a rash that looks like insect bites and should we be on alert for other areas the Sjogren's might be affecting ? My eyes and mouth are amply moist, and teeth strong.

Hello there, Sjoggies with Rashes, I began my sjogren's journey by having skin problems years ago, and all of the lovely expensive creams I was given did nothing to sooth the agony of itchy skin and nasty rashes. Eventually, and I do mean that word, I was seen by a dermatologist who like some others, did a biopsy and also removed a patch which was quite ugly to see, and the results showed I had bowen's disorder, a mild skin cancer that does not cause any other of the more serious types of cancer symptoms. It is surface skin, just surfing my body. It does look horrible and I have to wear long sleeves at all times, because the sun light burns my skin like it was 100 F, when it's only 18-20 C.
Now, I have also been offered some bandaging which comes with its own kind of lotion to moisturise the skin by way of saturation with it. No room for my skin to escape the moisturisation. I'll be going for this when the virus Covid-19 allows me to go into the building, rather than by phone conversations and camera visuals. I have found another solution that helps me, but may not be for everybody. I drink ice cold water, by the full glass, no half measures. Usually it involves 3-4 pints, and then it calms down the itch to tolerable. Before that, I could easily run a two minute mile! By the way, I don't and can't run anywhere! This has to have something to do with hydration when the body has dried up all of the moisture in my skin, as it does when attacking an organ. The skin being the largest of all. At first, it was embarrassing to even present to a doctor, as it feels as though I do not clean myself properly by the appearance of red itchy and scratched skin. It is a sorry sight which family and friends find shocking to witness. I am very fair skinned and fair haired so as a child would burn in no time at all. The dermatologist suspects the problem was developing all of those years ago in my skin as it was subjected to UV light, but children just want to play out, not wait for parental skin covering in creams. I also have lost almost all of my teeth, they just fall out and not from any pain in their roots, my jaw has shrunk so I cannot have any implants or bridges or dentures. My mouth cannot accept them. My eyes are also affected giving me blurred vision and a degree of vision loss from long term problems, which I have recently found out have developed a small cataract. My symptoms are vast, and amazing to see, but that is just silly old me. I hope you have some reassurance of not being alone with these mysteries.
Take Care of You as no one else will do it the right way.

So sorry this has happened to you. I have not been diagnosed yet with Sjogrens but I know I have it. I going to the dermatologist again with my agonizing itchy skin and scalp. I seriously feel like I’m going crazy. Take care

Hi I have sjorgrens, and lupus, without psoriasis and psoriatic arthritis, just getting arthritis shouldn’t cause you to get psoriatic arthritis however if you have had it for a long time it usually manifest’s over year’s. Otherwise I would suggest that you have your thyroid tested it can cause many problems like tiredness or fatigue. Sjorgrens can cause many different kinds of rashes, go to a dermatologist and don’t take more than a ten minute shower un luke warm water the water has fluoride and chlorine. My other concern is that you said that you take walks around around the lake, that immediately brought to mind lime disease, could you have been bitten by a tick? If so there’s a blood test for that! I always take photos of any type of rash including face rash, lupus causes and butterfly rash around the face and it’s also accompanied by sjorgrens disease! It’s very hard to diagnose but looks up the 29 signs of lupus and lupus butterfly rash it may help. I hope that this helps you in some way! Good luck!

I have Sjogrens. I wasn't until 5 years after diagnosis my throat became dry and have difficulty swallowing. My sinus is dry now all the time, which causes a nasal drip. I can use OTC eyedrops 2 x a day for eyes, and it works for me. No rash that I've seen. Bad sun rashes, and allergy rash though. I developed Sjogrens before the shot. Since the Moderna shots I have psoriasis, and had Lichen Planus on my leg. Shot seemed to stir up immune disorder. I should have refused the shot because I had an immune disorder, (Sjogrens), but doc said it was ok, and work encouraged it so much I felt pressured. Won't make that mistake again. I still have the psoriasis and it has grown to all over my entire foot and ankle. I hope you have a smooth ride with the Sjogrens. Mine just gets worse with age I'm afraid. Best wishes.

Did the hydroxychloroquine work for you? I have been told I most likely have Sjogrens. Mine manifests itself as welts on the palms of my hands and the inside part of my fingers. The welts are very itchy and can be painful. Makes it difficult to sleep. I am concerned about what other parts of my body are being impacted. There are other rashes and itchy areas on my body as well.

— Jun 5, 2022

Hi I was just diagnosed with sjorgens with just sjorgens im not sure if lupus will cling on to it I became so depressed my boyfriend left me because I started getting this red dots and hives I refuse to go on any medication just creams and eyes drops we should really push the foundation or even get on the news nothing is getting done except giving us poison thats why I refuse to take these drugs im just lost in shock i was supposed to be married but my body was to ugly im assuming there's no cure for the symptoms but everybody stay strong pray for a cure as we all deserve.

An anti-inflammatory diet could help you with the symptoms if you won’t take medication. If you do have Lupus, please consider medication as it could save your life. Lupus affects the internal organs and can be life threatening if left untreated.

Putting creams on your body isn’t much different than taking pills. They are still chemicals that are absorbed into your body. If you want to be well, you have to be willing to help yourself.

Oh honey, I am sad to hear about the icky boy who left you! He probably does not know much about love…. It is now just 2024 and I hope you are feeling spiritually better. The Sjorgrens I have had since 2009 and does seem to progress in sporadic jumps. The rashes are a thing now for me. I have lost all my molars and wear a plate. Seems to me that there is always a reason to be miserable in this life and we must diligently look for joy.

— Jul 8, 2022

My skin was suffering from many skin rashes. I consulted many doctors but nothing could make it. I am looking forward to making an appointment with you and getting your advice. Please share your number! or email me.

— Dec 16, 2022

I have scleroderma, they thought it was lupus and get lots of skin rashes that itch, especially at night. Can't go in sun, either. Very dry skin. Used to have oily skin on face, but now very dry.

— Mar 6, 2023

I have had an itch in the groin all the time and the private area dermatologists have given me every steroid cream on the market if it works its only for a short time. They did biopsy 1 after another and they showed nothing this has been going on since 2018 I was just told by my rheumatologist that I have Sjogren's I am also on 4800 mg of Gabapentin for vulvodynia itch also. I feel I am going out of my mind . Need answers? Does anyone have these problems? Please help Cathy

Hi, I don’t have Sjögrens but my daughter does. I have other autoimmune diseases. Your mention of discomfort in the groin area led me to wonder if your dermatologist or gynecologist has considered checking you for vulvar lichen sclerosus. I was recently diagnosed with that. It is autoimmune and very unpleasant to say the least. It generally appears when other autoimmune illnesses are present, and with the dryness associated with Sjögrens, I can only imagine that this could be prevalent with Sjögrens. It is not an internal condition, so it often gets missed in routine gyno exams. It is external on the vulvar area in females. It is typically treated either by gynecologists or dermatologists, but many doctors aren't well educated or well versed in it. I read you had biopsies, but if not of the exact area of the skin that is bothering you, the lichen sclerosus won't show up. Https:// has a lot of helpful information. I hope you find the cause and some relief.

Wondering if you are under much stress as it can cause itching. My mom has it and almost nothing helps. She had been prescribed low dose of Xanax and I told the next time the itch started to take one. She finally did and guess what…the itching subsided. I have sjogren’s as well but my itching is more widespread. Not much helped until I started taking care of my mental health by going to therapy, getting plenty of exercise, and sticking strictly to a special diet that eliminates inflammation causing foods. I gave up dairy and can’t eat anything processed or containing preservatives. I have rheumatoid arthritis and lupus as well. I suffered for a long time, even on medications, until I decided I didn’t want to feel that way anymore. I have always eaten pretty healthy so it wasn’t that hard for me. It is hard when I’m fatigued and exhausted because quick foods are usually full of the things I don’t eat. I am sure to keep healthy snacks in hand like fruits and raw veggies. Also I love avocados so I make guacamole and fresh hummus. Check out the ‘Whole 30’ plan. It’s a diet that slowly eliminates certain foods so you can find out what your sensitivities are. That way you can avoid them. Also, meditation! Helps with the stress, the itching, and the chronic pain. I wish you well!

— Nov 6, 2023

Hi I’m not sure if someone can answer this but I was diagnosed with Sjögrens through lip biopsy in 2021 when I was 20, it’s now 2023 and I’m having severe dry mouth but also developed this flakey rash in my ear with fluid constantly leaking and around the same time I developed swelling and extreme dryness on my anus (tmi) this was around September. It’s now November and I started developing these purple and red lesions on my butt that are very dry and crack and bleed. Not sure what to do with my health at the moment seeing as things are getting worse. May someone please help give some guidance on what I should do. I’m already trying to get a better rheumatologist.

Greetings fellow sjorgies. I have been aware of my Sjorgrens since 2009 when I was 54. It is so very pleasant to belong to a group. I am a farm wife who now refuses to garden or walk on soil or grass. I am staying on the gravel road, in the house, in the car, grocery or in a shop building as insect bites are just horrible! The old skin barrier just ain’t what she used to be. I am about to give up shopping for fashion although it is great therapy for me and has dispelled many a migraine. I have been going to a Chinese acupuncturist and herbologist. He has given me a horrible tasting tea that he made up for dry weeping eye and it works. There is a pot of Egyptian Magic ointment that I really should be using. He says I need to give up dairy and that will be so tough since I so enjoy the texture of melted cheese and puddings.
I try to maintain a thankful attitude for all my joys in life - birds, sky, oxygen, books, music, etc. Seems like every age I have been has its challenges. Chin up, I say as I sit here with a horrible rash on my neck and chest that was biopsied and diagnosed connective tissue disorder as in lupus. Went away and now is back in another area on the neck and chest normal female attire uncomfortable. It is always something, dontcha know. And with age I am multitasking as it is many things. I made the rounds to the docs this year trying to end the pain in my back and hips. Spinal fusion and hip replacement they said. Steroid injections another said. PRP injections yet another advocated. The acupuncturist said, “ They are a hammer you are a nail, I am a needle you are a pincushion.” And we laughed. Keeping the sense of humor or getting it my key.
Rejoice we are on this planet together! Glad I found this site! At Last!

— Jun 14, 2024

Sjögren’s causes so many dental issues. If you need dental care, try in-state dental schools for care. Fees usually go by your income. Also try Staywell (or the equivalent). They also offer discounted care by income. They may not offer a full range of services, depending on staffing, but may have relationships with local dentists for care, sometimes discounted. I needed two root canals and several fillings, and between Staywell and a local dentist, got everything I needed (my Medicare wouldn’t cover it). It’s unbelievable how many of us are stuck in really bad positions. I really hope this helps someone.

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