Red dry skin patches with SS.

Does anyone with SS or RA get red dry patches on skin that isn't Psoriasis? My derm says it not that and just some type of inflammation but doesn't know what and gave me low dose steroid cream to put on which helps but it doesn't get rid of it. It's always pink and sometimes flares and gets little scales. Anyone have similar problem? What is it?

62 Replies

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  • Yes totally - sunlight is the only thing that improves it. Mine is only on the back of my hands.

  • Did you get a diagnosis? Is it from SS?

  • No - just added to list of probs!

  • Aren't we funny, sunlight aggravates mine!

  • True! Lol. People with SS should avoid the sun but the sun does help a lot of skin conditions.

  • I get patches mainly on my hands but i have also had small patches on face. My cheeks and chin have become very flushed , i have sjogrens so don't think it a butterfly rash . I just use some steroid cream and lots of moisturiser all over as my skin gets very dry. I like anything with shea butter as it seems to help

  • Could be Rosacea? This reacts to sunlight and spicy foods and looks very similar to Lupus rashes but it's a different condition.

    I get this I think - at least that's what a dermo diagnosed me with a few years ago but it's under the skin on my hands and fingers now too - which isn't Rosacea but looks the same i.e little burst blood vessels. Don't get the spots though and comes with wind and cold on my cheeks.

  • I don't know what it is ! Ive always had bouts of eczema on hands and body but face usually ok . I don't eat v spicy foods , drink alcohol or get weather beaten . My face has broken blood vessels and is v red on cheeks and chin for last couple of months with a couple of small eczema like spots . It probably is rosacea but will need to ask doc . Ps I also have alot of blood spots over body

  • That sounds to me like Rosacea. I know it's very common with connective tissue diseases and it causes spider veins on cheeks too. Also shows in Scleroderma as telengiecstasias - usually on face and palms.

  • I've looked at photos of eczema and mine looks different. Maybe I'll find another derm.

  • Could possibly be Raynauds/ CREST related as you have Raynauds? Look up telengiecstasias (and initials of CREST/ limited systemic sclerosis. Are you very fair skinned like me? I think my rubbish skin on face might be because I used a lot of hydrocortisone when I was younger - especially around my mouth which has a really horrible red rash all the time. Mine doesn't correspond with the blushing and acne of Rosacea either but apparently this does cause tiny spider veins. Maybe it's all just part of Sjögren's for both of us? it is a connective tissue disease after all? Or could be our immune systems are suppressed by own medications?

  • Im really not sure, it has got worse on my face in last 6 months in particular and i have so many blood spots all over. I was quite shocked looking at photos recently as the redness was awful☹️. I do have quite fair skin .

  • Defintely mention to rheumy nurse. I have red follicular sports all over both my legs now - the plucked duvet look. X

  • I'll look that up. Thank you

  • I'll look up Rosacea. Thanks for the tip. My derm is new one. Perhaps not a good one.

  • Sounds like psoriasis to me. Though I hope it's not, hoping it's something easier to get rid of.

  • It looks like psoriasis photos to me. My old derm said I have that on the top of my head but I'm unable to see it. They stopped taking my insurance so I had to go to a new derm. Maybe she isn't a good one. :) I also have basil cell carcinomas and that was my main concern but they don't think that's it either. Think I'll just treat as psoriasis for now.

  • Eczema perhaps? I've never had Psoriasis but have had eczema all my life. It flares very similarly to Psoriasis when you get run down and itches a lot. Otherwise could it be a drug reaction or allergy to food or new washing powder perhaps?

    I have a form of eczema (had many forms for decades) now called Pompholyx and it's flaring uncharacteristically in my finger tips in the form of tiny tapioca like blisters that are flush with the skin.

    I'm not sure it's related to Sjögren's (dry skin is certainly a feature of SS) but I'm told by doctors it's probably related to my Raynauds. Haven't had any skin problems for years so it's really annoying to have this going on in fingertips and under the tips of my nails! Makes typing very sore and it burns bad freezes alternately! X

  • Not having any of issues you are. There are so many forms of auto immune that all run together.

  • I have it on the soles of my feet so have to keep my feet cold even in winter

  • The skin problem could be connected to an SS problem called Scleroderma a common part of SS. I have had your problem for years with patches of reddened skin and hard nodes under the skin. It is a complicated problem like all SS problems. A skin biopsy may help. I make sure my skin is moisturized all the time, don't let it dry out and avoid long periods in the sun as it can damage an already sensitive skin. Look up Scleroderma on google for information. I have found through experience that the medical profession do not seem to know much about SS. It is an annoying problem as it does cause a blotchy look. Make sure you use a moisturizer that is chemical free may need to go to a health shop. Avoid chemicals in food and cosmetics especially on your face.

    Traveller.

  • Hi Traveller - I have noticed and made that same comment before - the docs - including rheumatologists, seem to know little about SS and care less. I don't understand why - it can be a really bad disease with very serious issues, like heart disease, blindness, nasal sores, serious skin issues, etc. Strange but, I guess I suspect that other conditions like RA or Lupus overshadow it..

  • I've met doctors who didn't know what SS was. They heard of it but no doubt it was a one page topic in their medical books. I would expect a derm to be better educated to it since auto immune system cause most of these skin disorders but maybe that's too much to handle. Just treat and move on. My problem is I want to know WHY. Lol.

  • I know, right? I guess that my frustration was the my rheumatologist, who was supposed to be the bastion of care for SS, was so uninterested, in spite of how serious it is as a disease... Sheesh

  • Yes I agree people with SS and Lupus have a real struggle trying to get answers for their problems. I have found a lot of help for myself by going onto natural remedies and multi vitamin supplements. I do find that any problem health wise that may crop up they blame it on SS whether it is or not but often cannot find an answer to SS problems.

  • Ha ha - They do the same thing with RD...

  • They usually know a huge amount more about RD than SD though!

  • Yeah - I was doing a lot of research on SS, and there is NOT a lot of research on it...

  • I've decided not to call mine SS ever but instead just stick to Sjögren's Disease because it's a disease not a syndrome. My reasoning is that SS is used for those with Systemic Sclerosis and Sicca Syndrome - which isn't the same as Sjögren's Disease to my mind - although obviously sicca is invariably a feature and Scleroderma can overlap for a few - myself included.

    So I cut and pasted Sjögren's with the ö and it now comes up automatically because I think Sicca Syndrome is rather misleading -or it is for mine anyway. Occasionally when I hate it with a particular vengeance I call it Njögren's (pronouced NO GRINS) which feels particularly apt! 😝😁😜

  • Good points. I used to just stick to Sjogren's, but all of the docs call it sicca syndrome so I kind of started to default to that...

  • Oh okay - so do you have Sicca Syndrome or full blown diagnosed Sjögren's then? If so you should correct the doctors when they say SS to you! We have to start by educating the medical profession and I'm a woman on a mission as you can see!

    Ps and I only make this point here because you said about ignorance about RD/ Rheumatoid Disease - the most well understood, most treatable and highly researched rheumatic disease by far!X

  • Yes, full blown for about 20 years as near as I can tell, but in remission now which is a relief

    You know, the worst part is that it was my rheumatologist who called it sicca syndrome. My GP has always called it Sjogrens..

  • That's so funny because my GPs all just refer to it obliquelyas "your connective tissue disease" or rheumatology issues but my last two rheumies called it Sjögren'sDisease!

  • I think in the case of my rheumatologist, she was just so enamored with the severity of the RA and what she could prescribe, she didn't really care about the Sjogrens. I tried to engage her in discussion about it several times to no avail - ha ha. How different they are.. Kind of like us, huh?

  • No actually they are the same really! You have reminded me that my first rheumy, who diagnosed RD, was same - he never mentioned Sjögren's or Raynauds once.

    He just nodded when I told him eyes were dry, nodded when hubby told him my fingers and toes were often white with cold. Sought second opinion with a professor who said that Sjögren's and Raynaud's would only ever be a secondary nuisance for me compared to RA.

    Third guy discounted all and said it was just RD that was currently innactive. Said I didn't have a CTD at all. Maybe Multiple Myeloma or neuro disease. Not his concern though. Only bother him again if I got a Vasculitis rash or swollen synovial joints in fingers.

    Finally rheumy no.4 rediagnosed me with Sjögren's and immediately focussed on my brain and lymph nodes and said my Sjögren's could put me at risk of brain disease or NHL.

    The main thing that keeps them focussed on RD is because it's treatable where Sjögren's isn't. They like to be able to diagnose and treat RD as this is what they are trained to do. The other diseases tend to get less priority because they are less treatable.

    Sjögren's is a major nuisance to them because there aren't any targeted treatments so they relegate it to younger sister disease only affects women of a certain age and forget about it unlesss it causes Lymphoma. Even the very neurological form gets called Fibro and people are put on Amitriptyline or Pregabalin so they don't notice it progressing as much. When they go numb they are told that it is too late. If it goes for kidneys or lungs or liver then they are referred to a specialistin these areas. What a cynic I am eh?!

    But I met a lovely woman in hospital in 2015 with double pneumonia who had Scleroderma with Lupus kidney and Sjögren's. She only got to see our rheumy once every 18 months because she was on mycophenolate and Iloprost infusions and he said that was all that could be done. She was furious about this! Tragically I heard that she died last year at 62 from pulmonary embolism - a Scleroderma classic.

  • Wow! wow, wow, wow is all I can say. That is horribly amazing.... And you know what? I believe you are right.. They like the RD because it is 'treatable'. At expensive amounts mind you. My MTX injectables were $24,000 retail a month. Who the heck that that kind of money???? (at least without insurance?) AND my former rheumy has taken around $30,000 in "gifts" last year, that she is not supposed to be able to take. Yet there it is on the internet.

    My GP tells me that the MTX followed by Biologics is the Gold Standard for treatment and even she rolled her eyes when she told me that. She was so stunned with my results and kept saying how amazing they are. She wanted to know what my first thoughts were when I saw my lab work, and I said, "Well, I guess I thought, holy crow! I really am in remission!!". She laughed and said, "..and the second?" And I said "In your face Dr. D****!" She laughed again and said that she had thought maybe that was my first thought.. ha ha

    Oh man, I have been so blessed. My GP has done all of this on her own and I told her that yesterday. She diagnosed the RD, the Sjogrens, the hypothyroidism, and now the Fibromyalgia. Thanks for a most interesting discussion Twitchytoes! May the powers that be bless us, every one..

  • Wow that is amazing about remission - well done you and your GP!

    I'm on Mycophenolate Mofetil (MMF or Cellcept to you I believe) and don't think it's got me into remission yet but MTX injections (2 years) knocked my RD for six and it's never come back - if it was RD but the last rheum thinks it was Sjögren's all along.

    I think the Mycophenolate is even dearer than MTX injections which is probably why so many aren't offered it! X

  • Hi Twitchytoes - I know what you mean about the costs. The problem of course is that the money we would have to pay personally is not what the insurance pays.. That is much less, at least here in the US. They used to show the total price, the discount and the actual payment, but I guess there were too many questions.

    It's frustrating isn't it? You finally get a label / diagnosis and think you know what goal you are running towards when they turn you sideways and tell you that you had the wrong goal all along. I have spent a great deal of time and effort in my search for remission, including exercise, supplements, Bravo probiotic yogurt, sleep, etc. I hated finding out that I had a disease lurking.... =)

    Here's keeping fingers gently crossed that they have the right diagnosis for you now...

  • Thanks yes fingers crossed. My neurologist said that all my neuro symptoms correspond with Sjögren's and as my lip biopsy was 100% positive she feels it's safe for her and my rheumy to work together on the basis that this is my main rheumatic disease. I read of those with all the symptoms of Sjögren's or SS who cannot get a diagnosis because both bloods and lip biopsy are negative. I would hate this most I think so I can understand how angry and let down they feel but at the same time I can see why they aren't diagnosed on severe Sicca symptoms alone. It's a hard one. 🤔😖🙄

  • I think everyone on here would agree that even though we don't want to know the diagnosis, it is better to know and start to treat correctly for the disease.

    I thought I would mention that my research (you can vet these of course) told me to try Evening Primrose Oil, Borage Oil and Black Currant Oil, all of which I have been taking (well, the first two anyway) for the last three or so months and I think they have helped a lot with my symptoms. I have also been taking collagen and keratin as well because my skin was getting so dry it was crepey. That seems to be correcting too.

    Have a great remainder of the week!

  • Sounds well worth a try many thanks!

  • My GP is very good, she called me today to see how my pain was as she knows It's worse with rain. We've had the tail end of a cyclone here in Brisbane & funny enough I've had little leg pain but I came out in hives everywhere. She said to me I'm sorry I'm not clever enough to give you any answers. No matter what she tries to support me & as she puts it " think outside the box"

  • Noting better than a Doc who supports you and cares enough to call you when it rains.. That is a great doctor!

  • I'm being tested for Scleroderma next month with a nailfold capilliary test. I don't seem to have the hard tissue underneath the skin though - which is a relief as my ANA has the pattern of Scleroderma and I do have Raynauds and telengecstaisa all over my hands and face. Will be using high factor suncream this spring and summer for sure.

  • I'll look up scleroderma and see if it's similar. Neither derm or myself wanted to biopsy since its on my face but that may have to be done to get a diagnosis. Thank you!

  • I think, if it's on your face, it's more likely to be contact some form of dermatitis. I had horrid rash on my face when I started reacting to Hydroxichloraquine. X

  • You don't need to have a biopsy if you don't want to but it would maybe help to diagnose the problem. That skin problem is part of SS and Lupus. Use a shampoo that has no chemicals in it likewise with skin lotions etc as there is detergent in many of those products that can dry your skin out even more.

  • Do you use any other moisturiser on your face and does it help?

  • I just use DoubleBase Gel myself. - it does the job. I don't like the little red patches under my skin or freckle clusters I seem to be getting increasingly these days or these little hard white spots I randomly acquire - but guess its just part of ageing. My skin is still far, far better than it was when I was younger and had eczema sores and patches of scaling and lesions everywhere. I think I'm quite badly steroid damaged after 45 years of using this stuff on my skin - was never warned of the long term damage it might do.

  • Some anti wrinkle which doesn't seem to be working. Ha ha. I might try switching.

  • I use anti wrinkle lotion that doesn't seem to be working on the wrinkles but it does leave skin soft.

  • Sjogrens effects every organ in your body and your skin is the largest organ. Doctors thinks Sjogren's is just dry eyes & mouth, Sjogren's also effects the digestive system so your body's not absorbing the nutrients need to feed the skin. I suggest you buy a bottle of Black Seed Oil from the chemist put it on topically as well as taking it according to the bottle and you should see a benifits in a couple of weeks but don't stop then keep taking it, it fixes everything look it up on Google.

  • Hi beverly , I was wondering if black seed oil would help the burning irritation i have on parts of my scalp . I have just started putting on hair oil but after reading posts again maybe black seed oil would be another possibility ?

  • Hi WV,

    have you used steroid creams or a 2% cortisone cream?

  • I have tried steroid cream without success , the black seed oil seems to give some relief but I haven't got to the root of the cause . Gp had no idea☹️

  • have you seen a dermatologist?

  • No , the gp could see nothing ! I don't know if its the skin or just pain in the scalp . If it doesn't settle with the oil i will make yet another trip to the doc- they are sick of the sight of me🙄

  • true, it could be nerves causing the pain and not the skin. Do you take something for nerves?

  • I take lyrica, it really helped with pains in muscles in arms and legs . The scalp pain just became bad about 5-6 weeks ago .

  • hmmm curious. An allergy would show on your skin I would think so that's probably not the issue. If the oils don't help you can get a biopsy at a dermatologist to determine if it's autoimmune or something else. Not the most pleasant procedure though. Hope the oil works!

  • Thanks , I wouldn't fancy the thought of a biopsy though ☹️

  • If you look up benifits of Black Seed Oil it says it's good for skin & hair and you can use it topically as well as taking it I would. Give it ago.

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