Hi I'm a 19 year old with Lupus. I've been diagnosed for about 4 years now and I was just wondering if anyone else has had the same annoying and irritating and demotivating experience as me when it comes to bathing and showering.
In my experience, I get this uncontrollable itchyness after showering. I've been having it since I got diagnosed. There is no red rash unless I excessively scratch the area, which is weird and annoying because I find no ways to sooth the itchyness. It happens predominantly around my legs and arms but sometimes happens around my torso too. At first it used to be for the time span on 45 mins to an hour, to which I got sent to the dermatologist. They gave me this menthol based cream. It didn't help in the winter. I use baby oil before showering so I get less exposure to the water. And have showers that last maybe 1/2 minutes to reduce the itchyness after showering. Even after all these ways of coping the itchyness lasts about 20 mins now.
It's a really demotivating experience, and makes me not want to shower AT ALL, sometimes even going without showering for as long as 3 weeks. (I know that's disgusting!)
I wanted to know if anyone else has had this experience, and what they did to cope with it, and even if they knew what it was caused by.
I am yet to go to the dermatologist again but I don't have high hopes.
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Ash2394
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Yes, I have this. In my case, it turns out my nerves over-react to the change in temperature. Try using a hair dryer on your whole body as well as to get your hair completely dry. It could be many things — allergy to bath products, dry skin. Is it a deep itching? I felt the same way. It is apparently common to become phobic when you have this issue. K
I will try hair drying. Can you tell me the routine you had when you tried this method out? And yes it is deep itching.
I was thinking about a few things it could be, for example dry skin or skin care products. My dermatologist gave me menthol cream to use to cool down the skin, another hydrating cream and also a soap substitute so I don't think its products.
I was also thinking maybe it's perhaps something in my diet or even the Meds that I'm taking. But I've been taking these Meds for over 4 years now and now sure what it could be. The itching started happening after one year of taking my Meds.
Firstly, know that they will take this issue seriously. It is a challenge to diagnose and treat. I learned about controlling the temperature from the internet! I was desperate. Looked up « aquagenic pruritis« and a few people described putting heaters in their bathrooms or putting on warm pajamas and getting in bed. I remembered the itching was always worse when I left my hair wet. So I tried drying my hair and using the dryer to warm my whole body. When I told my neurologist about it, he said « That is smart. Your nerves cannot tolerate the change in temperature. « If it is an allergy, this won’t help. But they can test you for allergies. What I meant by « phobic » is that people with aquagenic pruritis become fearful of taking a bath. Do you have any peripheral nerve involvement? Do you have trouble in the heat? K
When I told my rheumatologist about this problem, all they did was refer me to the dermatology. I do have problems with excessive heat and excessive cool temperature. I assumed it comes with Lupus. Oh I understand what you mean by phobic now haha 😅.
It's difficult to invest in things like getting better heaters in my bathroom because of financial issues within my household.
From other replies, I might consider the problem being one of my Meds; hydroxychloroquine. It seems to be a recurrent thing that keeps being mentioned. I will ask my rheumatologist about it and see what they say and also ask them about allergy tablets maybe, to see if they work because I wouldn't want to get off hydroxy- because it helps with my joints and muscle pain.
Thank you for your reply though, as well as everyone else who replied. I will definitely look into aquagenic pruritus a bit more though.
My rheumatologist first sent me to the dermatologist too. That is the appropriate referral. If it is temperature sensitivity, no need to get a heater. My hair dryer works great. Hope you get to the bottom of it. Don’t hesitate to go back to the dermatologist. K
I used to get this. It started off just after bath or shower but got so bad it used to keep me awake at night. It was the worst thing about having Lupus for me.... worse than any pain. For me it was down to my meds. I was on hydroxychloriquine for around 2 years. This helped immensely with my joint pain but when I came off it the itching stopped. I now on methotrexate and don’t have any of those symptoms. Try changing your meds.
Also for me, it wasn’t really itchy skin... it was deeper than that... it was in my peripheral nervous system so no amount of creams (or scratching) etc helped. Don’t know if it’s the same for you but I really hope you get to the bottom of it. No one understands how debilitating terrible itching can be: I really feel for you x
I understand the itching as I get it too or rather I did before I got a water softener...I did that when I noticed it was a lot less while on holiday in a soft water area. I also use simple soaps to avoid all the crap that's put in shower gels etc...and a moisture as quickly as possible.
I hope you get some help as it's maddening when your whole body waits a good scratch...
My daughter removed products containing formaldehyde. This included personal cleansing, clothes washing and make up. Google is the easy way to check! This solved the problem. Best wishes Kevin
I get this too, and after experimenting with lots of products have found some that help ( generally anything hypoallergenic and paraben free) I’ve found that looking at Amazon reviews quite a good way of deciding. My showers are lukewarm and always have been, because I prefer that.
For my face I use what they call French Paramacy products ( Avene, Vichy etc)
My shower phobia is more to do with the hatred of feeling so cold when I get out!
If you are worried about getting a bit gross, try some of the large hospital wipes they use for the bedbound. Hope you find something.
I get this with showering. It might be due to the hydroxychloroquine, but it is horrible and puts me off taking a shower. I've noticed that it doesn't itch so much after a cooler shower.
Try showering in the coolest water you can stand... only lukewarm.
Also, use very mild soap and shampoo that is fragrance free. The baby oil could actually make it worse by trapping soaps in your pores if you have a soap allergy. Baby oil would only treat dry skin and not itching triggered by other things.
Have you tried bathing with Dermol 500? you can buy it from the chemist, or on prescription. It can be used as a soap alternative, or as a topical moisturiser. It's so debillitating itching all the time, and scratching just makes it worse and trying to sleep ARGH!!! I was prescribed this from the dermatologist. I don't actually have Lupus, I have Vasculitis and Secondary Sjogrens Syndrome.
I also have this terrible itching, the only way for me is baby talc powder, put on everywhere, especially my thighs and arms , tried everything else but this stops it for me every time. I hope it will work for you .
Hi yes I too have had the same problem it lasted for about a month. The only way I got rid of it was to get a bath in coconut oil then after drying put more on. I had to shower in it too plus I got magnesium salts and Dead Sea bath salts it took ages to go it drive me nuts. It’s calmed down but still hasn’t gone. I have started with psoriasis amd rashes. It’s been a problem on and off for a few years. Definitely get some 100 per cent coconut oil as it’s supposed to have over 200 properties it’s very good for your skin. I also had to start anti histamines too. It got so bad I was washing in mineral water only as the water burnt my skin. I was told it can happen when you become sensitive to the chlorine in tap water. hope yours calms down. Elena
Dermacool - the strongest % - really good - I use Johnson’s top to toe as der o creams they gave me made things worse. Look Dermacool up and you can get it in Boots. Good luck
I have very dry and itchy skin . There is no trigger to the itching, it can come on under any condition, at any time of day or night and usually affects my limbs occasionally my torso. As I read all the posts I had an intense desire to scratch in different places on my arms and legs. I'm scratching as I write this post. I'm waiting to see my Dermatologist in June at the joint Rheumy and Derm clinic. Currently prescribed Dermol cream - an antimicrobial emollient and Cetraben (which my GP is refusing to prescribe with the change to over-the-counter medication) - a SLS and Paraben free moisturiser. Thankfully at my last Dermatology appointment the Dermatologist wrote a prescription for two 500mg tubs, this will see me through until I have the energy to do battle with my GP surgery.
I have aquagenic pruritis too. I have had it for 30 years but very recently it has become unbearable and I too dread showering. All I can think is it may be due to hydroxychloroquine which I have been taking for the last 3 months. I have tried emollient creams, itch relief lotions and creams, unperfumed products, shower not too hot etc but nothing helps. I am going to ask my doctor for capsaicin cream and give that a try. If you find something that works please let me know!
It's such a struggle, because hydroxychloroquine is an essential med for my motivation. Reduces my joint pain and motivates me to get up in the morning with reduced fatigue, but on the other hand like you said, it has this itching effect that is unbearable and it makes you eventually dread showering.
In one of the posted above they said no amount of cream would work for something like this, so I might try allergy tablets, and if they don't work, I'll ask about taking off my hydroxychloroquine and see if there's an alternative maybe.
My husband has just given me some of his cetirizine tablets so I'm going to give them a whirl as well. Let's hope they help! I would be very reluctant to abandon the hydroxychloroquine as my rheumy says it will give me some protection against any serious complications of lupus. The itching is misery isn't it? Almost painful. Best of luck with the allergy tablets. Keep me posted!
I have real issues with water exposure. Please look at my posts.
I was recently told the rash/itching is caused by the change in temperature stimulating better blood flow to the skin.
I get awful livedo and apparently this is due to a blood flow issue.
To be honest most of my poorly days consist of feeling like I’m being eaten alive by crawleys under the skin , sometimes my itching causes me to bruise
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