does anyone else get extreme itchiness with SLE

Hi All,

I have recently been diagnosed, and i found rather oddly that my toes have become incredibly itchy.

There is no rash they just itch a lot and its becoming unbearable. Does anyone else get this? If so what tips or treatment do you recommend to help this.

I have a docs appointment soon so I will raise then but until then could anybody help me please :) xx

8 Replies

  • Yes initially I did in the extreme, arms, legs, head, scalp. Not so much trunk. Soft gel type ice pacs saved my life & much of my hair. Just the toes you say? It makes me wonder if your itchiness is maybe nerve related. Anyhow I hope your Dr can help. Best Wishes to you. Kaz x

  • I find I have itchy arms and legs but most irritating is the feeling that I have a stray hair on my face, but in different parts ... There never is one! GP doesn't seem concerned about this, but I wonder if it is a side effect of medication...I am on hydroxychloroquine and methotrexate. I hope it turns out not to be anything horrid for you!

  • I do, on my scalp although showering does help that, and also mainly on the shins - as you say, no redness or swelling just an itch - it does go off eventually and I find that something light like Vaseline Intensive Care Cream does sooth it. Drives you mad doesn't it. I'll be interested to see what suggestions your doctor makes. Sorry I can't be more help.

  • Yes, I get periods of itchiness, the tops of my feet and my ankles are worse, stretching doesn't relieve it, I just use a steroid cream and E45 itch cream. Cool gel packs help too.

  • Hello. Yes, a big problem for me over the years and I'm sure I have posted asking for tips at some point myself. I was diagnosed with SCLE 3 years ago and I can now see that I don't itch when my lupus is under control. I have previously suffered from eczema and allergies and itching has been part of me for most of my adult life. But I started MMF in July 2016 and I have to say now that the lupus is mainly under control the itching has virtually gone. I have experienced itchy palms of my hands. itchy finger tips, itchy back with a crawling sensation, itchy feet, itchy scalp, itchy legs - which I have scratched and made bleed on numerous occasions. I take 2 anti histamine a day, to help with my allergies and itching. The GP gave me hydroxyzine 10mg tablets to help control the itching and help me get to sleep, which i still take. I found I was keeping myself and my husband awake with my itching at bed time and driving us both nuts. I have tried various creams and lotions. E45 makes me worse. I like Aveeno and straight coconut oil as moisturisers. Also vaseline intensive care range is OK. I have experimented with various shampoos too. But currently back to my faithful Pantene. As i said I have learnt that really none of this makes any difference, just needed good control of the lupus. So can totally relate to you. Is your diagnosis SLE? And what medication have you started? Have you seen a dermatologist and told them? One of my tips, at the outset, would be, I keep a daily diary of my symptoms - skin and systemic etc, as this helps at medical appointments incase you forget things. Also, take photos of your skin issues, if you have itched and made it sore, photograph how bad it is. I have my photos printed off for appts. Can argue with a photo. Good luck and I hope you find some relief from your itchiness soon.

  • Hi MsTMP,

    I hope that your doctor is able to help with this symptom when you see them. We did an article last year about itchy rashes in lupus. It has a lot of tips for coping with itching, so you may want to take a look -


  • I also have extreme itching, cam be anywhere on my body , sometimes I scratch so much I draw blood! Its so annoying. Not sure if its due to dry skin , but started using a moisturiser when coming out of shower to see if that helps

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