SLE and terrible itching after shower!

I was diagnosed with SLE 3 years ago and theres alot that goes on but this is by far the worst... Itching. So this has probably already been discussed but I desperately need to vent! This is an on and off symptom but it is soooo irritating! Ever so often I get out of the shower, or if any water touches me for that matter, and I get this terrible itch! Its sooooo horrible that I cannot concentrate and I have to prepare myself to feel this horrible sensation. I cannot take showers or baths in the morning before work because I have to deal with the itch for atleast 30 minutes after water touches me. I cant go swimming or sweat or anything! Could this be from the Lupus? Medication? I really need help and doctors cant seem to diagnose or tell me anything! Its to the point where I cry sometimes because I am so frustrated... Anyone have any ideas? Also lately my my eyes have been itching uncontrollably and they hurt and swell from me scratching them so much. Does anyone have this problem also? This itching is ruing my life!

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20 Replies

  • it can be a side effect of meds or the wash you use

  • I get itching but it doesn't seem to be related to water. I try to keep cool and use a non-perfumed moisturiser. I wonder if it would help if you shower in cooler water and just pat yourself dry rather than rubbing? I hope that helps - its horrible isn't it.

  • Feel for you, constant itching is awful. I do get a terribly itchy head in the evenings. I found changing my shampoo to body shop ginger anti dandruff shampoo helped. Now two thirds of my hair has gone so I just assume the itching is something to do with the hair loss and lupus being active under my scalp. My dermatologist gave me a mousse to put on my head which is supposed to help bu hasn't as of yet! I too sometimes get itchy eyes. Have you spoken to your rheumy about possible side effects of your meds? Or maybe ask to see a dermatologist.

    Good luck and I hope you get some answers soon xxx

  • So sorry to hear this DL and thank you for this response B, as I also have an itching scalp, especially in the evenings, and am losing lots of hair. Fortunately I had incredibly thick hair or I would be bald by now. I also get sporadic itching all over my trunk in the evenings, sometimes also in the mornings, and wondered if my autoimmune hepatitis was flaring as your have horrendous itching all over your body with jaundice. I also have an itchy rash on my forehead which I have been prescribed primocrimolus (spelling?) for and this is really effective although as soon as I stop using it the rash comes back.

    I think you should ask for a referral to a dermatologist DL if you haven't already, they are the experts and should know how best to help.

    Good luck, I hope you find a solution soon DL .

  • Hi, I too get terrible itching after a shower. I have put it down to a change in temperature, going from a hot shower to cool air.

    Also I use non perfumed shower wash and pat myself dry. I can feel the itching coming on so I get dressed ASAP and get doing something otherwise I would just sit and cry. Hope that helps xxx

  • Hi danie,

    I know exactly what you mean! I have had it so bad that I have nearly passed out. I went to the docs and she immediately thought it was allergy based. Particularly to uv light. Now this made sense, so I have changed all my light bulbs to led ones as the energy ones emit uv. My theory is that it doesn't happen in the summer cos you use sunscreen all the time. Bathing is the only time you expose to the light. That being said, I don't shower unless I have to and I wash my hair bending over so that it doesn't come in contact with my skin. And I moisturise before I get in. All that seems to reduce the itching, but it is still there. Do you take any antibiotics? Some of them can cause light sensitivity.

    I also find removing the hairs on my legs helps. I use an epilator. Takes the edge off the itch!

    I am in total sympathy.

    If anyone else has any theories I would love to hear them.

  • Hi Danie_Leshaye,

    You may find this blog article we did on itchy rashes helpful, as it compiles a lot of people's tips for dealing with itching.

  • Hi, I had that terrible itch too which is a side effect of your medication my Rheumatologist suggested taking Loratadine (1 tablet a day) and the itching completely stopped. Also I only use Simple shower gel for washing (I can't use anything else). I use Aveno cream after bath on my skin (good cream for dry scaly patches). I have been on Loratadine for 3 years and easy to buy over counter at Pharmacy. Give it a try!

  • I suffer from exactly the same thing I was told by my gp it's the water stripping the moisture from the skin so now I use baby bath gel with a prescription wash cream call oilatum which you rub into wet skin and rinse pat dry and then use an embolient called cetraben all over. Some days after the shower no itch sum days lasts about 10 mins however I will take antihistamines when this happens.

    I fully understand how you feel, it's like you want to rip your skin off and no amount of scratching helps it.

    I hope this is of some use not a cure but lessens it!


  • It could be the products you use in the bath or shower or for skincare. SLS can be very drying to the skin & is found in most shower,bath & hair washes. Also,MI or MIT found in many skincare products is now known to cause itchiness & eye irritations. I work with Neals Yard Remedies Organic Skincare & none of our products contain any nasties but there are other ranges out there too.

  • Itching was driving me nuts. Right on my back where I can't reach. The dermatologist told me that perhaps the water was too hot and it was drying my skin out. I have cooler showers now and don't get nowhere near so much itching. I do however think some of it is caused by the medication.

  • Hi danie leshaye,

    I'm so pleased you have posted this as I've been experiencing the same thing for a few months now although not as bad as you. My legs itch so badly when I get out of the shower and feels like thousands of pins pricking my legs. I've also developed itchy arms and scalp in the evening too and have just started taking loratadine but it's not made a difference yet. I also use diprogel on my arms which reduces the itching slightly. I really feel for you as I know how awful it is. Good luck and keep me posted as to what helps. X

  • I have had the itching after a shower my entire life. I know mine is not due to meds, it's not an allergic reaction to any,shampoo, body wash or anything. I too have had it so bad it made me sick, feel like I was going to pass out and cry and take away every ounce of my energy. I have seen millions of doctors who treated me like I was a freak or a circus act its not funny. It consumes my mornings. Was just diagnosed with SLE

  • I too itch terribly after showering, so I shower using Aqueous Cream, then moisturize with Balneum Cream followed by a steroid cream called Betnovate.

    I also take antihistamines but I take 3 after my shower, then another 3 after I get dressed and this was helping until recently. I am now starting to itch between my knees but nothing seems to be helping anymore.

    I only limit myself to having 2 showers a week as the itching is so draining.

  • I feel your pain. This is horrific. Not only is the itching a physical nuesance but it makes me absolutely disgusted of everything. Like if I see a stray hair somewhere ill want to puke bc I have a bit of hair phobia when its laying around, but its all so much worse when I'm itching like this. For me I start to feel it when I'm actually in the shower for awhile. This is torture and if I wasn't such a clean freak id get down on my showers. Its terrible and I share in your pain. Try using a blow dryer to dry off. I heard this works. Its worth a try

  • I too have that awful and dreadful itching after bathing showering or a bath doesn't matter I still itch like I have some kind of bugs under the skin trying to get out. BUT I did some experimenting and found something that works rather well for me I fill the bath tub with water then add about 2-3 cups of oatmeal it's a natural skin soother I also add a few drops of eucalyptus and peppermint oils no more then 3 drops of each. After I get out and dry I lather my whole body with a mixture of cocoa butter and a bit of cortisone 10 anti itch cream and it doesn't get rid of the itch 100% but it's enough to where I don't have scratches all over my body and I can actually go about my day without dreading bathing and the painful itching. I hope that my little experiment will also help a bunch of you as well good luck. Please stay positive and remember we may have lupus, BUT it doesn't have us. Stay healthy and happy

  • I have the same thing. And yes, it is indescribably awful.

    Like yours, mine is sporadic (so not after every shower), it sometimes occurs when any wetness is present like sweat or water splashes whilst doing dishes.

    For me it is mainly on calves and upper arms but can occur thighs and other areas too. It's overwhelming and like intolerable torture for up to 30 mins. I have tried moisturising after shower, shorter, milder shower all with varying but inconsistent impacts. Shaved legs helps (or rather, longer hair on legs seems to make it worse). Sometimes after I pat myself dry, I get dressed or under the covers as quickly as possible as contact on skin by fabric has a marginal positive impact.

    I have SLE. I only take plaquenil but I used to take Pred and this only started when I stopped the Prednisolone BUT it also coincided with a house move. I have tried telfast, that helped a bit.

    Dr's have not been able to tell me what it is. I might take this conversation string to my Dermo. It's not just me!!

  • Sorry this is 2 years late but I have SLE as well and this stupid itch after water touches you is called Aquagenic pruritus. I still take baths but the whole time im in there my legs itch like crazy. It stops after I get out but If you google Aquagenic pruritus it says it can last up to half hour after contact with water. Its so annoying!!! I havent figured out how to stop it yet.....ARGH. I feel your pain

  • Oh ya I forgot, sometimes when I get out of the bath, I get in the shower and run cold water on my itchy legs and it makes them stop itching pretty quickly.

  • Hi there !

    I live in NY, but found this forum & looking for info on the same thing! The itching I have after a shower is truly enough to make you scream!

    I take daily antihistamine & it had been helping, but today it started again after not having this for months. I was diagnosed with SLE 2 yrs ago & was in plaquenil & prednisone for over a year. I stopped both meds almost a year ago, long story. I think that is when this first started. I have changed everything, shampoo, shower gel etc. no difference.

    Mine is limited to my upper body (thank God) !

    The ONLY thing that keeps me from losing my mind is Gold Bond medicated powder, not the cream. I look like a ghost after using it (that's how much I use), but don't care. Same thing with my GP & rheumy. They have no idea.

    If you can, order the Gold Bond & give it a try. Hope it helps you as much. Believe me I load it on, but in less then 10 minutes the itching has stopped !!

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