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Wat bedoelen ze met hoop op boostershots
covid 19 voor lupes en andere autoinmuunziekte.
Ik gebruik plaquenil.
Unfortunately, dry, itchy skin is a common problem in lupus patients. Most patients try everything they think may help, like using soaps like Dove (which is usually bad for lupus patients). They find themselves miserable from the itching, thinking that all is lost. However, there is hope. A dermatologist who specializes in dry skin gave me some great tips that work for the vast majority of my patients. I am happy to share them with you here.
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NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
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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.
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.
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.
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. Also, do not smoke.
– 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.
– 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 pH5 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.
– Fabric softeners and fabric dryer sheets
– Wool clothing (wear cotton instead)
– Fragrances and perfumes
– Nickel jewelry
– Household cleaners
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Not all itchy skin is due to dry skin. Other examples include the following
Hydroxychloroquine (HCQ) can irritate specific nerve fibers known as “itch nerves.” Hot water irritates these nerves further, causing intense itching after bathing or showering in warm water. Since the itch is not due to histamine (as occurs with allergies), typical allergy drugs like anti-histamines do not help.
Aquagenic pruritis occurs in approximately one out of every 20 patients taking HCQ.
Drugs other than HCQ can cause itch as a side effect.
Chronic means that something lasts a long time. Iiopathic is the medical term for “we do not know why.” So, chronic idiopathic itch is when itching occurs for more than six weeks (chronic) and there is no identifiable cause (idiopathic) like drugs, dryness, rash, allergies, or neuropathy. As with HCQ aquagenic pruritus, it is due to chronic irritation of itch nerves. Anti-histamines are not helpful. Drugs that reduce nerve activity help reduce itch severity. These include gabapentin, pregabalin, paroxetine, and cannabinoids.
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Read chapters 8 and 14 of The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia.
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
If you have itchy, dry skin and have lupus, what has your experience been? What do you recommend for other patients?
Do you have any questions to ask Dr. Thomas?
Please click on “Leave a Comment” above to comment.
Click on “SUPPORT” at the top of the page to learn how you can support “The Lupus Encyclopedia“
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Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
If you have lupus, what has your experience been? What do you recommend for other patients?
Do you have any questions to ask Dr. Thomas?
Please click on “Leave a Comment” above to comment.
Click on “SUPPORT” at the top of the page to learn how you can support “The Lupus Encyclopedia“
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.
Dr T
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
Dr. Thomas,
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.
Thank you,
Teresa Kowalczyk
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:
https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/
and
https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/
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
I am having a terrible time with the skin on my arms. Rash and extreme itching. I was reading that you should use Cearve as soap. There are so many different types and am not sure if I should use lotion or cream ? Any advice would be greatly helpful. Thank you.
Erin: I am not a dermatologist. But my friend, a medical dermatologist, specifically recommended CeraVe Cream. That is what I use, and when I have horrible itchy skin in winter, it works great
Donald Thomas, MD
Hello Dr. Tomas: I was recently diagnosed with Sjogren’s. I’m 60 and have always had smooth, unblemished skin, as such, dealing with dry, itching, bumpy skin is completely unfamiliar territory. Erin’s question and your response were both answered prayer. Thank you very much for taking the time to share all this very useful information. God bless you!
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