New research suggests itchy skin is a sign of active lupus.
Most lupus experts also know this. However, many other doctors do not. That is why this research is so helpful.
We do not want itchy lupus rashes to be confused for allergic reactions.
TABLE OF CONTENTS
1) What Patients Have Known for Years: Itchy skin is a sign of active lupus
3) How often did itchy skin occur in lupus patients?
4) What body parts most commonly had itchy lupus skin rashes?
5) What times of day did cutaneous lupus itch more often?
6) Itchy lupus rashes mean lupus is active and needs better treatment!
7) How patients described their itchy lupus rashes
8) What was associated with less itching?
9) My takeaways as a rheumatologist:
10) What I recommend to patients:
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
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!
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
I get flare ups where I get really itchy, my head gets really itchy and throughout my body gets really itchy, it usually happens without a rash though. I have felt that It is my SLE flaring. I take hydroxichloroquine, but not sure what else may help.
Hi, does the itchy flare go with fatigue symptoms for you? I seem to be flaring with itch but no accompanying rash, joint pain with fatigue .
Hmmm I do. Actually right now too. Since I have systemic, not cutaneous, I never realized it could mean SLE activity….
I am crawling out of my skin itching and now waiting for steroids to kick in. It’s unbearable and feel like no one knows what to do.
I am on remicade infusion and Plaquenil.
Melissa: Sorry just saw this. So how are you doing now? If better, what did the trick?
Donald Thomas, MD
Thank you!! I’ve been trying to figure out why my normally good skin feels like bugs are crawling on it. There is no visible rash but I’m skin sometimes feels bumpy underneath.
Itching without rash with my skin lupus. Worse at night. Take 3 m of prednisone a day. Can’t take plaquinal. What can I do for the itch? Is not drinking enough water a problem? Would Benadryl help?
First it is important to find out the cause of the itch. By far, the most common reason this time of year in lupus patients is dry skin. Two very simple things to try: For soap, only use Ceravie Cream (arms, legs, etc)… for underarms/private parts/feet: use Eucerin Calming Bath Oil Soap. Use NO other soap, not even Dove. Take cooler baths/showers than usual, put a humidifier in your bedroom and turn it on 1 hour before bed each night. Let me know how you do.
Donald Thomas, MD
I was diagnosed about 4 mos ago with sle. Started Plaquenil. Got the itchy arms, no rash, usually a few hours after dose so thought was a side effect of meds. My rheumatologist thought so and is changing me to Azathioprine, which is terrifying because of side effects. Is there a possible end to itching if I stayed with Plaquenil, which seems like the safest option? Help!
Dear Chris: I do not blame you, and the good news is “yes!”
Ask your rheumatologist if it is OK for you to do desensitization. Most patients with HCQ rashes are able to tolerate it well by starting with tiny doses and slowly going up. Go to the following page, print it out, and ask your rheumy if it is OK for you to try. I’m sure they’ll most likely say “yes.”
Good luck, and I hope it works!
Donald Thomas, MD
This is so interesting. My name is also Chris. Diagnosed with sle 4 months ago. Itchy arms, no rash, from Plaquenil. Given Aza recently. Took a few days and felt sick. Read about side effects and got scared. Told my dr I would rather deal with itch so continuing with Plaquenil. Learning ways to deal with itch. I find itch intensifies after scratching and then can’t stop and it makes u crazy. So I take it at night so I’m less likely to scratch and can sleep thru it. I recognized heat makes it worse so I take warm showers now. I also learned that ice is a huge relief. I’m now getting products without chemicals and I use very heavy body cream on my arms after showers. We’re so lucky it’s just arms. Still hoping my body will adapt. Good luck!
Chris: btw, the most common cause of itchy skin in lupus without a rash is dry skin (esp worse in Winter)… use a humidifier in house, especially bed room, turn down heat in shower, only use Eucerin Calming Bath Oil for soap for underarms/feet/privates… everywhere else for soap use CeraVe cream as your soap.
Those are dry skin secrets from a dry skin expert dermatologist
This will probably help you more than Plaquenil densitization
Donald Thomas, MD
Wow. I am sooo glad I stumbled on to this page! I literally was diagnosed this morning although I suspected I’ve had lupus for years. It was nice getting all the test results back after waiting a month and thru the holidays. I also have been living with RA since I was 10, I just turned 62. All of it Complicated by peripheral neuropathy and diabetic neuropathy. So some misdiagnosis of my lupus symptoms for years left me feeling like wtf is wrong with me?! I have been taking SO much Benadryl for the itching and hydrocortisone creams because the intensity of the itch was at times unbearable. Always same spots, scalp like crazy, upper arms, upper back and neck, chest, nose, top of butt crack and groin area. Years of crying, drawing blood from scratching and knowing it wasn’t normal. I’ve had some challenge with cold DRs with egos also which makes everything so much worse. Today, I feel human again because I now know I wasn’t crazy..I have lupus. I feel hopeful. I will try anything to get relief and feel better. Again I am thrilled I found this page and you. Tmw I am getting the products you recommended, firing up humidifier and cross my fingers. Thank you for caring!
Rebecca: You just made my day and I hope you are doing better. I hope you saw my page: https://www.lupusencyclopedia.com/how-to-succeed-after-lupus-diagnosis/
Donald Thomas, MD
Diagnosed with Lupus 2011.I do get the itch but no rashes and it is also localized at the moment it is in the left and right forearm mostly in the evenings the itch can sometimes become unbearable like someone is burning me
I’ve had lupus for 6 yrs. I have the same uncontrollable itch that occurs,mostly in the morning or evenings and there is no rash. The itch is most of the time on my legs, ankles, wrists and arms.
The itch can becomes so bad to an extent that I scratch myself open or my body becomes red and swollen…this makes it hard for me to fall asleep…
The moment it starts I worry of the extent and period that it will itch 4 because of previous experiences when it lasted for a long time..
For me Steroid cream only help for me whilst rubbing it on and the itch does not go awaY the cream soothes the skin after all the scratching..
The itch makes you feel mentally crazy thats how bad it can get for me…often a cold shower helps.