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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. 


Comments

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!

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

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.

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://lssupportnetwork.org has a lot of helpful information. I hope you find the cause and some relief.

I saw your comment on lichen sclerosis check out the coyle institute he’s the only one in the country that I’m aware that has come up with a treatment for it beyond what is typically prescribed. Ive seen before and after from the procedure and it’s shockingly impressive. I will try anything rn it’s not a fun diagnosis to deal with. gL on your health ❤️

— 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.

— 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.

— Jul 29, 2024

Just diganosed with sjorgens and mild lupus. Have red bumps that just appear on face,neck,back and sores on scalp. Also have interestial cystis about a year I thought I was having IC flare nothing helped. Then had horrible aching thrombin in pelvic area and vegan dull ache. Was told had pelvic floor disorder went to physical therapy. Therapist said having pelvic muscle spasms very severe. Nothing helped but xanax tried antinflamatory drugs ,muscle relaxants vaginal Valium nothing helped. Have researched lupus cystits very rare but I seem to have all symptoms. I go to lupus rehumatologist next month hope to get answers Has anyone had any of these symptoms. I have been a wreck for over a year Finally I hope I have found out why I have had all these problems.Also family history of autoimmune diseases. Would love to hear if anyone can relate. Thank you