I have had bouts of itchy skin (with nothing to see )which I think comes with the territory of a lupus diagnosis . I am careful with soap powders , foods , creams and perfumes . But recently my skin has been terrible and I feel I’m missing something and would appreciate the thoughts of anyone in this group . I take mycophenolate, hydroxychloroqunine, Topirimate, pregablin, propanolol and folic acid , nothing has really changed tablet wise in a while . I use paracetamol for pain . I have tried dipribase cream but there is no rash just itch , itch , i could take my skin off ! It’s on my neck, face, arms legs and scalp. I use a medicated shampoo and have stopped washing my hair whilst in the shower.
Any thoughts or ideas 🤔 would be appreciated.
M x
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Maddymay65
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hi Maddymay65, I get itchy skin too. Don’t know the cause, skin can sometimes look dry, I only get a rash if I’m hot (disappears after cooling down) I find myself waking up during the night scratching everywhere.
I’m afraid I don’t have any answers, I’ve never queried it actually but maybe I should ask to see dermatology 🤷♀️ I also have PBC, and on their forum lots of people have itchy skin, so I don’t know if that’s the cause or sjogrens or lupus sle or even lymphodema.
I don’t shower every day anymore, I tend to leave it every other day and just a ‘cats lick’ in between and hair wash once or twice a week as my hair isn’t greasy. I use lots of cream or oil. I prefer moisturising cream rather than the thick gooey cream. I also have a body brush that helps. If anyone else has an answer, that would be great 🙂
Yes I do and it has been worse this year , I have not heard of that . But that’s interesting because when I take antihistamines I feel my skin is less irritated 🤔
Hi, MaddyMay65, that's how my lupus started and was diagnosed. I don't get much in the way of a rash most of the time, just the huge itch. On top of Hydroxy, I take the antihistamine Fexofenadine (300 mg) daily, and use Dermol 500 moisturising cream, also daily - you can get both on prescription . . . they tamp it down for me normally, but when it's really bad, I generally need a week on steroids . . . Like Chris21, I no longer shower daily (apparently very bad for you: washes away the natural restorative oils!), and I also use a body brush (but you do have to be stern with yourself about brushing too hard, which just causes a whole new set of problems. Although I don't react to the sun as badly as some of you, I still don't go out without Factor 50 and sleeves, hat, etc - no point courting trouble! The dermatologist who diagnosed me with lupus said I shouldn't forget skin is the biggest organ in the body and needs as much consideration as anything . . . And yes, I agree with Chris21 again: I would definitely ask for a dermo consult (but *not* over Zoom! You need someone to be able to *see* you). Good luck!
Thank you for your response . That’s really helpful, I have been fighting on for a while now and not winning . I will ask my gp for a dermatology referral. Meanwhile I will try dermal to cool my skin down , at night it’s waking me up
We would definitely advise seeing your consultant or your GP so that they can investigate and advise what treatment may be most appropriate for you.
In the meantime, you may find this blog on coping with itchy rashes useful, as it contains various tips from different people about what they find helpful: lupusuk.org.uk/coping-with-...
Thank you Debbie the article is really useful , so many helpful ideas that I had not heard or thought of . I will also see my gp and speak to my consultant
I’ve had lupus now for 21 years and had itchy skin since day one there’s lots of creams you need find one that suits you
But I’ve come to the conclusion that before using creams I’ve never moisturised first but I do now morning and night it seems to do the trick try it I use aveeno
Thank you, i will have a look at that. I did not realise there were so many others with the same problem . Great that we can advise and help each other.
hi there. I’m not diagnosed with lupus (although I follow because I have many pointers) but I do have Sjogrens and systemic sclerosis. I get intensely itchy skin with no visible rash and have to take Piriton syrup (I struggle to swallow tablets) 10ml nightly and sometimes cetirizine by day. I really know if I haven’t had my antihistamine.
I had a bit of a brainwave about my itchy scalp while in hospital very recently, on IV vancomycin for an infected portacath. Every time the vancomycin was running my arms and feet went extra tingly and my scalped itched like thee was no tomorrow. It was horrible. I was convinced that I must have alopecia plus terrible dandruff but on a nurse examining she could find nothing to see at all. So I decided that it was due to the confirmed neck and spine degeneration I suffer from and the odd positions I was getting into with painful cannula and having to use a commode (🤦🏼♀️). I’m told by my neurologist and dermatologist that arthritis of spine plus likely Sjogrens small nerve fibre neuropathy can cause dreadful pruritis with no visible rashes so on this occasion I blamed my neck and the strange effect of the last resort antibiotic . When I was trying to recall something I’d read I looked up on Google and this is what I concluded for myself ncbi.nlm.nih.gov/pmc/articl...
Other thing worth checking I believe is liver as liver problems can cause invisible itch but my own liver bloods are okay presently.
My wound itself has also itched from initial insertion nearly a month ago, right up until now. It’s apparently healing well (plus second incision since portacath had to be removed finally). I can see that stitches and a wound healing would result in itch but this wound itched even when infected with nasty cellulitis. So I also decided that a neurology registrar was correct when he said this is some kind of mast cell response I have to myself - particularly when my overlap disease is active or when I’ve been subjected to unknown chemicals.
I’ve been off Mycophenolate for nearly 4 weeks and I’m convinced this is partly why I’m invisible itching so badly.
Dermacool 5% is what my neurologist has prescribed and it’s the only thing that helps my neuropathic itch - although it’s mentholated so have to take care to avoid eyes and genitals. Might be worth trying? - someone with scleroderma told me about it first and it’s very cooling and soothing. I’m waiting for my chest wounds to heal first before getting back onto it. Scalp I only use capasal shampoo and occasionally a fungal one my dermatologist issues for sebhorric dermatitis - which I also get occasionally.
Sounds like you have been through the mill, hope you are getting some relief. Thank you for the article , its very interesting reading . I have also wondered about Mycophenolate which i take 3 times a day . Looks like i am gonna have to compile a list of creams to try. I have had hydrocortisone with little effect so far .
I come and read people’s responses and nearly every day I learn something new! It never occurred to me that my degenerative spine could be the cause of an itch! The article link makes an interesting read, thank you. Hope you are starting to feel better. 🙂
I sometimes get an itchy palm or spot on my arm(s). I have been using over-the-counter Hydrocortisone Cream with Aloe, and it helps relieve the itching. I did mention it to my rheumatologist, since I think it is lupus related, and he told me I should see a dermatologist. If you are anything like me, I am seeing more than enough doctors (Primary, Nephrologist, Endocrinologist, Rheumatologist, Pulmonologist, Surgeon(s), Gastroenterologist, Podiatrist, Pain Management/Osteopathic Manipulative Physician, along with eye doctors, dentists, etc.) I really do not want to add another one to the list. When I next see my Primary, I will mention this to her and I am sure she will the more helpful than the rheumatologist was.
Hi Maddymay65,I can totally relate to your itchiness. Like yourself, I could rip my skin off to obtain a little bit of peace.
I have a condition called Dermatomyositis. Affects both skin & muscles. I have had this for over 8 years. I am on Mycophenolate Mofetil along with lots of other drugs.
For the itch, I am prescribed Fexofenadine (highest mg intake) combined with Certrazine. I also take Hydroxyzine in the evening. Along with these meds, I apply topical creams: Elocon Steriod Onitment for body & Elocon Sclap Lotion.
I hope you find a solution to help you. As there is nothing worse than being in constant itch with no repreave.
Gosh that’s a lot to remember and deal with you . Thank you for sharing . I understand the « could scratch skin off just to get peace » it’s terrible . It never used to be like this, it’s like a switch has been flicked . One of the gifts of lupus it’s definitely sent to try .
I will have a look at some of those creams , thank you.
I had serious itching that coincided with my taking Hydroxychloroquin. I did not realize that was the likely cause until I read somewhere that it could be a cause. None of my doctors thought that was the cause. But I reduced my dose from 400 mg to 200 and then took it back up to 300. It helped enormously. I take 100 am and 200 pm. My itching now comes and goes but is not as bad.
Check out Aveeno too, I found it calmed down itching especially at night. I had awful facial reactions to sunlight and discovered that it was caused by the interaction between creams with perfume in (most of them) and sunlight. Had to go to Ninewells hospital in Dundee where they have a specia dermotological centre. Since I stopped using things like Nivea, I've been fine, but keep out of the sun. But this itch is about bits of the body not exposed to sunlight.
hi, I use a cream called Dermacool, it contains menthol, it’s the only thing I’ve found that soothes the itch, it comes in different strengths, and I find the 1.0% one works really well.
hi Maddymay65, just replied to post by Joanne, me too itchy all over scalp, all of the body, becoming unbearable and depressing. My GP said it’s because of my anemia but it’s been lower than it is now and not had this intense itch. Sometimes I feel like something is crawling on my skin. It’s sound like we are all looking for answers here. Anybody with advice.
Seeing Rheumatologist September, hopefully the prof otherwise I won’t get anywhere others are useless. All the best Noo x
I too suffer really itchy skin feels as though I have a spider crawling over it too sometimes, I have found it’s a lot better if I use a Sanex body wash it’s a sensitive one for dry skin so No perfume in it and it has an oil base but like some people say I too only shower every other day and I avoid getting shampoo on my skin by bending over to wash my hair adjusting the shower head so it doesn’t go on the rest of me. I use double base gel for my skin by prescription but find the body wash which is also prescribed for me not so good so use the other one instead, and just use the double base body wash when I’m in a flare. I tried the double base flare gel the other day when it was on special offer and that was very good only used a tiny bit and it stopped the itchiness and dry patches straight away so that’s quite economical. Hope you find something that works for you
Thank you lupie-Cathy I will have a look for sanex. I agree with not washing hair in the shower I suddenly realised how irritated my skin felt if I did . And the spider feeling it’s horrible you have my full sympathy . The double base gel sounds good to , getting some of these things prescribed can be tricky but I will see
I share this problem and assume it’s Lupus related. I do take Chloroquine too. With me the itching varies a lot - in intensity and frequency of occurrence. When it’s bad it horrible. It’s as though it’s the flesh that’s itching rather than just the skin. Nothing seems to help.
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