SLE itching, restlessness & insomnia

I experienced my first attack of lupus a year ago, now looking back all the symptoms had been there for years but until I became unable to barely move and demanded a blood test my virus turned out to be lupus! I was told it was probably lupus but would have to wait 3 months on the NHS to be diagnosed which meant no treatment, so I paid privately to see a consultant. I was taking steroids up until June and I have just carried on taking Hydroxychloroquine. I have always been quite restless and struggled with sleeping But over the last month I am constantly itching I saw the gp who suggested not taking med for a few days to see if this eased symptoms so now on days 3 came out in a rash yesterday on my face so wondering if I'm about to experience a relapse symptoms not improved taking piriton which was helping me sleep but doesn't seem to be working now I don't know if anyone else has experienced this, the itching used to just be in the eve but now it's constant. Any suggestions would be appreciated not sure how much longer I can cope


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8 Replies

  • Yes I have experienced itching just like that, it drives mad sometimes. It seems to come and go on phases. Unfortunately the docs seem to only recommend piriton or steroid cream.

    Have been on hydroxy for years and if I forget to take it get terrible rashes it seems its the only thing that alleviates them.

    Hope you feel a bit better soon

  • Yes itching is one of my main symptoms and also at night. I have been on hydroxychloroquine for just over 3 months and I do believe it is helping. To ease the itching I take anti-histamine tablets before bed, but have not needed to over the past month or so. So Based on my experience I don't think tbe hydroxy will be causing the itching.

  • I get itching a lot and this time of it gets worse so I often shower 2 or 3 times a day and use aqueous cream in the shower then copious amounts of emollient cream then I let that dry then put E45 itch relief cream on (have used various steroid creams but me E45 works better).Mine is definitely effected by food... To much sugar or yeast but I do know we are all so very different and what works for one doesn't for another!! Best wishes to you.

  • I find Aloe Vera gel helps soothe the itching, doesn't cure it but makes it more comfortable to live with. I think the itching is most likely the Lupus

  • I get this itching periodically. I take an anti-histamine every day (cetirizine) which is less 'sleepy' than Piriton and it does help. Dry skin does seem to make it worse as does using too much bubble bath. Epsom salts in the bath is soothing but I always moisturise after. It's my legs - shins and feet - mostly. Will give aloe Vera a try as have a large plant! Never had a firm medical opinion on the itching. Docs says dry skin and allergy of some sort (I have multiple allergies).

  • I thought the itching came from exposure to uv light inside &outside the house and shopping inside stores.. If U use florescent light as most people do today. Anywhere unless there is shade.I would.think. that's what seems to cause the itching. I thought. Diane in usa

  • Hi,sort must be so uncomfortable for you, IV had lupus for a year when i was on hydro i had really bad itch on azathioprin now c if U can get bath oils don't use any soap or gels..t.c hoe feel Bette soon..suki

  • Thanks for all your replies, it's so hard to know what to do For the best am going to try to see my consultant as haven't taken my meds now for 5 days still itching taking piriton twice a day but it's bare able currently just concerned that my lupus isn't seasonal as coming up now for the year when the joint pain started. It is reassuring to know that I'm not alone although the thought of having to live like this isn't appealing especially with my two year old and full time job.

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