Quick Advice Guaranteed to Help Most with Dry Itchy Skin:
- Stop using Dove and other soaps that say they are for dry skin. They are often not good enough for lupus and Sjogren’s
- Instead of those soaps, get CeraVe Cream (or another ceramide) and use that as your soap on the face, arms, legs, and torso instead of soap. It should be your new soap.
- Get Eucerin Calming Body Wash Daily Shower Oil (easily found online, like at Amazon.com). Use this daily as your underarm, private areas, and feet soap. If you ever get dirty (like after working in the garden or with machinery), then use this on other body areas, followed by the CeraVe.
- Turn down the temperature in the shower and tub just a little. Slowly try to go down over time. Warm water removes valuable moisturizing oils from the skin.
- You MUST have a humidifier at least in the bedroom (turn on an hour before bed). Keep one at your work area (room where your desk is) as well.
- BUT … read all the directions later on in this article to do your best. If you have secrets to share, please comment to this article so others may learn from you.
- Itchy skin can occasionally be due to active skin inflammation from lupus (cutaneous lupus) … so read my other blog on itchy cutaneous lupus rashes on this topic as well. However, dry itchy skin is a more common cause of itchy skin in lupus patients than active lupus inflammation.
Itchy, dry skin in lupus and Sjögren’s: what is the relationship?
Sjögren’s disease is also a systemic autoimmune disease closely related to lupus. Sjögren’s occurs when the immune system mainly attacks the body’s glands, causing decreased fluid production. This results in dry mouth, dry eyes, dry skin, dry sinuses/ears/nose, dry upper airways, dry vaginal area, and dry skin. People with Sjögren’s will develop some dryness problems more than others.
Around one out of three people with lupus also have Sjögren’s disease. We call this an “overlap syndrome” when someone has more than one systemic autoimmune disease. Therefore, when someone has both systemic lupus and Sjögren’s disease, we say that they have “lupus overlap with Sjögren’s disease.”
Many doctors say this person has lupus with “secondary Sjögren’s.” “Primary Sjögren’s” is when Sjögren’s occurs by itself without another autoimmune disease. Around half of Sjögren’s disease patients have Sjögren’s by itself (primary Sjögren’s disease). However, the Sjögren’s Foundation has a campaign trying to eliminate the terms primary and secondary, fearing that doctors will give less attention to Sjögren’s patients labeled as having secondary Sjögren’s. They fear that doctors will concentrate just on the other autoimmune disease, in this case, systemic lupus.
How is Sjögren’s disease diagnosed?
Many lupus patients who have Sjögren’s overlap syndrome do not know they have Sjögren’s. They often do not tell their doctor about their dry mouth and dry eyes, not thinking these problems could be related to their lupus.
The first step is to tell your rheumatologist if you have dryness in these areas and ask, “could I have Sjögren’s disease in addition to lupus?”
Your doctor can perform tests to measure dry mouth and dry eyes. An eye doctor (optometrist or ophthalmologist) can help measure dry eyes. A Schirmer’s test (like in the photo) can measure dry eyes. A sterile paper strip is placed under the lower eyelid for 5 minutes. Then it is removed, and the amount of wetness is measured. 10 mm or less of wetness is abnormal. 5 mm or less is used to diagnose Sjögren’s for research purposes.
Having an anti-SSA antibody increases the chances of having Sjögren’s. The “SS” in anti-SSA stands for “Sjögren’s syndrome.” Anti-SSA is also called anti-Ro antibody.
Sometimes the doctor will order a lower lip biopsy. In this procedure, a tiny slit is made in the lower lip. A few small salivary glands are removed and examined under the microscope, looking for evidence of inflammation from Sjögren’s.
However, evidence of dry mouth and dry eyes with systemic lupus is enough to diagnose Sjögren’s overlap syndrome. Having an anti-SSA antibody makes this diagnosis even more likely. Having swelling of the parotid glands (salivary glands in front of the ears) can also be seen. Other labs that help increase the chances of having Sjögren’s overlap are being positive for rheumatoid factor or antinuclear antibody, having an elevated gammaglobulin level, or being positive for cryoglobulins.
How does cold weather cause dry, itchy skin?
Most people with dry skin will notice it more when cold weather hits. The skin often becomes itchy as well. This is most common during late fall, winter, and early spring. Although the skin may appear dry and scaly, it can also look completely normal, only having scratch marks from itching it.
The amount of moisture in the air is affected greatly by temperature. Warm temperatures contain more humidity (water) than does cold. Inside our homes, we crank up the heat. This dries out the air even more. These effects (cold, dry air outside and warm, dryer air inside) cause moisture evaporation from the skin.
I have gathered the following advice from my dermatology peers. It includes products they recommend for use in dry skin.
Keep the body’s water supply high (hydrated)
The skin will have a hard time staying moist if the inside of your body contains less water. Your body will want to reserve vital fluids for vital organs (brain, heart, kidneys, etc.) rather than the skin.
– Drink at least 9 glasses of water a day for women and at least 11 glasses a day. These are the latest recommendations of the Institute of Medicine. If you are drinking enough water, you should be going to the bathroom a lot. Drink your water mainly in the morning to keep from getting up in the middle of the night a lot to urinate.
– Avoid dehydrating fluids such as alcohol and caffeine. Both of these cause the kidneys to excrete more water from the body.
Humidify your home to help itchy, dry skin in lupus and Sjögren’s
– Use a humidifier in each room of your house. Keep air humidity about 55% – 60%.
– A cool humidifier near the bed is a must (we spend more time in bed than anywhere). Have it running at least an hour before going to bed.
– Clean and dry out humidifiers daily to prevent mold and fungus.
– A better option is to have a centralized humidifier installed in the furnace.
– Also, consider having a central air ultraviolet light plus filter to decrease the risk of spreading infections such as fungus and mold throughout the house.
– I have had patients become quite surprised by how much their dryness problems (eyes, mouth, and skin) improve simply from having humidifiers throughout the home.
Body cleanliness without drying out skin
– All “soaps” remove vital oils from the skin, drying it out. Do not use soap on most body surfaces, except underarms and private areas, more than a couple of times per week. Using no soap is even better (see below).
– Use an oil-based soap such as Eucerin Calming Body Wash Daily Shower Oil instead of other soaps (even those that claim to contain moisturizers). I use this myself and find it much less drying than other soaps such as Dove.
A TOP TIP for itchy, dry sking in #lupus and #Sjögren’s: Use a moisturizer, NOT SOAP, in the shower on areas of dryness. CeraVe or AmLactin are excellent choices. Consider a moisturizer, such as CeraVe, as your main “soap.”
– Shower or bathe in lukewarm water, not hot. Hot water removes the natural, lubricating oils. Whatever your bath or shower temperature is currently, make it slightly cooler (the cooler, the better). A good way to do this is to turn down the heat just a tiny bit that is barely noticeable. Then, every few days go down just a little bit more. Keep doing this until you find a tolerable cooler temperature. This cooler temperature will leave more important moisturizing oils on your skin.
– Take shorter baths and showers.
– After bathing or showering, pat the skin dry; do not rub (rubbing removes moisturizing oils).
– Apply a moisturizer to dry body areas immediately after bathing. Do this before the moisture dries out from your skin.
– Use a heavy-duty moisturizer that contains urea, glycerin, lactic, or alpha hydroxyl acids (such as CVS Healing Skin Therapy Lotion or AmLactin Cream).
– Consider moisturizers that contain ceramides, which can help repair the skin’s protective barrier (such as Aveeno Eczema Therapy or CeraVe).
– For areas of very dehydrated skin, consider using petrolatum (Vaseline) or body oil (such as Neutrogena body oil, RoBathol, or Aveeno Skin Relief Shower And Bath Oil) right after you bathe and while your skin is still moist to trap moisture in the skin.
– Reapply a moisturizer several times a day.
NOTE: I do not get reimbursed or compensated for mentioning any of the brand products in this blog post. They are here as practical examples for the reader.
Avoid substances that irritate dry skin
– Fabric softeners and fabric dryer sheets
– Wool clothing (wear cotton instead)
– Fragrances and perfumes
– Nickel jewelry
– Household cleaners
Eating an anti-inflammatory diet may help lupus and Sjögren’s
Wat bedoelen ze met hoop op boostershots
covid 19 voor lupes en andere autoinmuunziekte.
Ik gebruik plaquenil.
Yvonne: I am not 100% sure of your question. However, it is currently recommended here in the United States for our immunosuppressed patients to get a 4th COVID vaccine (if Moderna or Pfizer) 6 months after their 3rd vaccine. Some immunosuppressant drugs (especially rituximab, mycophenolate, steroids, and methotrexate) lower COVID vaccine response rates. I hope this helps.
Donald Thomas, MD
I’ll google translate for you (hope it works):
Yvonne: Ek is nie 100% seker van jou vraag nie. Dit word egter tans hier in die Verenigde State aanbeveel vir ons immuunonderdrukte pasiënte om ‘n 4de COVID-entstof (indien Moderna of Pfizer) 6 maande na hul 3de entstof te kry. Sommige immuunonderdrukkende middels (veral rituximab, mikofenolaat, steroïede en metotreksaat) verlaag COVID-entstofreaksiekoerse. Ek hoop hierdie help.
Have there been any studies about Lupus and / or Sjogrens patients using Nootropics with their current medications? I have dealt with both diseases for over 20 yrs and recently started using some Nootropics along with my major medication of Mycophenolate. Thank you
Cindy: No there is not. The research behind Nootropics is thus far not very good. You will not be able to find any large randomized placebo-controlled studies to show that they actually work. (be wary of their marketing that makes them sound like they are well-researched). Even the best-studied drugs ever for memory (Alzheimers drugs) have very borderline results. I wish there was an easy answer… but up to this point, exercise is the number one best drug for memory followed by diet (Mediterranean and anti-inflammatory) followed distantly by “possibly” … brain games and brain exercises. With out aging population (to include me)… it’d be nice if there was something so simple to do. Personally, I would not spend my money on them yet.
Donald Thomas, MD
Is it possible to get a copy (via email) of your blog post regarding Hydroxychloroquine that was sent out 10/14/2021? I tried to access it to show my rheumatologist but got an error message that it could not be found.
Dear Teresa: Thanks for paying such close attention to my blog. I hadn’t done a HCQ blog post since FEB, so I was surprised to see that you got an email 10/14. Researching this, it looks like it happened when I was just starting to learn how to manage an email list, and I must have clicked a wrong button somehow. My last two blog posts on HCQ are:
However, I should do one on HCQ drug dosing. It is a complicated and confusing subject (basically no more than 5 mg per kg of actual body weight, BUT measuring HCQ drug levels can help refine dosing much better).
I hope that helps,
Donald Thomas, MD
Thank you for this information: I have had lupus since 1979. Now I have connective tissue disease intestinal lung disease sjogrens disease. I found your article very informative