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.
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
Thank you for the reply btw!
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.
Also what do you mean by phobic?
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