Itchy Skin Can Be a Sign of Active Lupus
Updated JUN 2023
Itchy skin can occur with active lupus rashes (cutaneous lupus). However, other causes are much more common, especially dry skin and aquagenic pruritus due to hydroxychloroquine. It is important to know the cause of the itching to decrease itching with proper treatment.
If you do not see a definite lupus rash and your skin is itchy, consider dry skin as a possibility. Find great advice on how to decrease dry itchy skin from a dermatologist expert in my dry skin blog post.
Update JUN 2023: Itchy skin due to hydroxychloroquine
A common, yet underrecognized side effect of hydroxychloroquine (Plaquenil) is itchy skin that occurs after taking a shower or bath. Dermatologists call it aquagenic pruritus (aqua- for water, -genic meaning caused by, pruritus is the medical term for itchy skin). Therefore, aquagenic pruritis means “itchy skin due to water.” I discuss hydroxychloroquine-induced aquagenic pruritis towards the end of this blog post. If you get itchy skin from hydroxychloroquine, please share your experience by leaving a comment at the end of this blog.
TABLE OF CONTENTS
What Patients Have Known for Years: Itchy skin is a sign of active lupus
Is itchy skin a sign of active lupus? Many patients are confident that lupus causes itchy rashes. They have told me this for years. However, I never knew the significance of this. Rheumatologists do not generally teach others about itchiness with cutaneous lupus erythematosus (CLE, skin lupus). In addition, previous studies suggested that CLE patients did not have itchy rashes very often.
However, then a 2018 worldwide study showed that 75% of patients with CLE had pruritis (itching) with their rashes. 567 patients with lupus filled out surveys for this study. They had to rely on their memory. This sort of study is called an “observational study.” It can have a lot of inaccuracies (such as not having perfect memory).
This same group of researchers then did a higher quality study, a prospective study, to see if these findings could be repeated. They published their results in the November 2021 issue of the prestigious journal “Lupus.”
How Was the Study Done?
- The research set out to answer the question, “does lupus cause itchy rashes? If so, when do they occur, where do they happen, which types of lupus cause it more often, what do they feel like, and what does itchiness mean?”
- 153 adults with systemic lupus erythematosus
- The research centers were in France, Italy, Poland, Japan, and South Korea
- They were followed over time from 2016 to 2018 (a prospective study)
- A study going forwards is more accurate than one that reviews charts and looks backward in time (called a retrospective study)
How often did itchy skin occur in lupus patients?
77% of patients had itchy CLE rashes at some point
- 92% of patients with acute cutaneous lupus erythematosus (ACLE, such as malar rash and generalized red rash) were most likely to have itchiness with their rashes
- 82% of chronic cutaneous lupus erythematosus (CCLE, such as discoid lupus) were itchy
- 71% of people with subacute cutaneous lupus erythematosus (SCLE) had itchy rashes
- Yet, only 50% of lupus erythematosus tumidus (LET) lesions were pruritic (itchy)
What parts of the body most commonly had itchy lupus skin rashes?
- The scalp was most likely to have itchy lupus skin rashes
- This most commonly occurred in ACLE
- The next most common places were the face (especially on the nose) and then the arms
- Itchy rashes on the V-line of the neck, back of the neck, upper back, arms, and buttocks were most often due to SCLE
What times of day did cutaneous lupus itch more often?
- The itchiness was most often experienced at midday and in the evening
- 80% of patients had itchiness at midday; 80% of patients had itchiness in the evening
- In addition, 25% of patients had trouble falling asleep or waking up in the middle of the night due to itching
- However, it could be felt any time of day and night in patients
- If your itchiness occurs after showering or bathing, and you are taking hydroxychloroquine, it could be due to aquagenic pruritus from hydroxychloroquine. See the section about this topic towards the end of this blog post.
- If the itching occurs in the feet when you are in bed, peripheral neuropathy should be considered. Ask your doctor. An EMG and nerve conduction velocity test can figure it out. Small fiber neuropathy can also do this. It is diagnosed with a skin biopsy.
Itchy lupus rashes mean that lupus is active and needs better treatment!
- Itchiness occurred while the rashes had active inflammation
- The itchiness was not common in CLE that was inactive and scarred (such as scarring, inactive discoid lesions)
How patients described their itchy lupus rashes
- Most patients had other sensations with the itching:
- 31% had “burning”
- In addition, 15% felt “like ants crawling”
- Half of the patients with itchy CLE had moderate or severe itchiness
- 61% said it was “annoying”
- 37% “burdensome”
- 20% “disturbing”
- 17% as “INTOLERABLE!”
What was associated with less itching?
- Only 33% of patients taking antimalarials (hydroxychloroquine and chloroquine) had itchiness at the time when seen in the clinic (labeled as current pruritis)
- Antimalarial drugs were the most effective treatment
- 35% of patients had less itching when using cortisone or calcineurin inhibitor (tacrolimus, Protopic) creams or ointments
- Cold compresses helped 8% of patients
My takeaways as a rheumatologist:
- Itchy skin is a sign of active lupus, especially when it occurs in the scalp and in cutaneous lupus rashes
- When it is present, it almost always indicates active inflammation
- This means I need to figure out how to control my patient’s lupus better
- If I have a patient with SLE in whom I am not sure if their SLE is active, if they have an itchy scalp, this could be a clue that their SLE is active and needs better treatment
- I found this research study to be helpful, practical, and it validated what my patients have been telling me all these years
- Kudos and thanks to all the investigators and authors for this important piece of research!
More common causes of itchy skin in lupus patients:
Itchy skin (xerosis) is probably the most common cause of itchy skin in lupus patients, especially in the 30% of SLE patients with Sjögren’s disease overlap. Another important thing to consider is itchy skin caused by hydroxychloroquine (especially aquagenic pruritis).
Dry skin as a cause of itchy skin
If you do not see a rash with the itchy skin, dry skin (called xerosis) is one of the most common causes. This is more common than itchy skin from cutaneous lupus in my experience. Dry skin may appear normal, “ashy,” slightly flaky, or look normal except for scratch marks (excoriations). However, sometimes it can cause an intense inflammatory reaction, causing redness that could be mistaken for a lupus rash (but it is treated with dry skin care instead of using cutaneous lupus drugs). Doctors cause this asteatotic eczema and xerotic eczema.
Thirty percent of SLE patients have Sjögren’s disease, which causes dry eyes, mouth, skin, sinuses, vocal cords, and vaginal area. Itchy skin is a common problem.
Itchy skin from dry skin tends to worsen in the Winter when there is lower humidity. There are many things you can do to help dry, itchy skin. Read recommendations in my dry, itchy skin blog that I learned from a dermatologist who is a dry skin expert.
Aquagenic pruritis from hydroxychloroquine
This is a common yet underrecognized side effect of hydroxychloroquine (Plaquenil). One case series showed that it occurs in 1 out of every 20 people taking hydroxychloroquine. (NOTE: The abstract is
Common symptoms of itchy skin from aquagenic pruritis
- Itchiness for 10-15 minutes after bathing or showering
- the legs and back are the most affected areas, but it can occur anywhere
- most commonly occurs 1-3 weeks after starting hydroxychloroquine
- antihistamines (like Claritin, Alavert, and Benadryl) usually do not help because it is not a histamine-driven itch (the type we see from allergies). Hydroxychloroquine stimulates “itch nerves” by activating receptors on peripheral nerves called Mas-Related G-Protein coupled Receptors (Mrgpr).
Treatment of itchy skin due to hydroxychloroquine-induced aquagenic pruritis is simple
- Take cooler showers and baths
- Do not take your hydroxychloroquine until right after you bathe or shower
- As a last resort, we can lower the dose of hydroxychloroquine
What I recommend to patients:
- If you have an itchy lupus rash or scalp, let your rheumatologist know
- Not all rheumatologists get the journal “Lupus” and may not have seen this article… give them a copy
- Also, abide by all the “Lupus Secrets“
- Download my free UV protection handout and do everything on the handout
- Take your hydroxychloroquine and never miss doses
Please comment below:
- Do you get itchiness from your lupus rashes?
- If so, what seems to help you the most?
https://journals.sagepub.com/doi/abs/10.1177/09612033211016098 Samotij D, Szczęch J, Antiga E, et al. Clinical characteristics of itch in cutaneous lupus erythematosus: A prospective, multicenter, multinational, cross-sectional study. Lupus. 2021;30(9):1385-1393. doi:10.1177/09612033211016098