Hi I have recently been diagnosed with Lupus
SLE I have been prescribed Hydroxychloroquine 200mg twice a day . I have become very sensitive to sunlight and my skin is so itchy . I can’t stop scratching and I also have a rash on my arms . I find I bruise more easily now to . Has anyone else experienced the itching .
Hi I just replied to your other post 😂 - I get extremely itchy too, I ltake piriton , the 1 you take every 4 hours which keeps the itchy skin calm x
I find a combination of e45 itch cream and Eurax helpful. I also use e45 shower cream and plain olive oil soap for bathing and hand washing.
The same happened to me. I took piriton but soon went back to the rheumatologist and had a change of drug which was much better all round.
I had itching for 2 to 3 weeks after starting hydroxy, but then it went away. The suggestions others have made are excellent
Cheeselove, I completely sympathise: I developed The Big Itch all over my body, which was how my own lupus was diagnosed. I take Fexofenadine daily (an antihistamine) which generally keeps it in abeyance, and use Dermol 500 and/or Aveeno (the thick one) daily (more often when flaring). When I do flare, steroids and (depending on where it starts) Betnovate, if I've broken the skin, or Eumovate or Fucibet (or a combination, depending on who's dealing with me). My dermatologist told me: lotions are pleasant but do little, medically speaking, creams are better, ointments are best. Do get it checked out. Good luck!
Fexofenodine has been very helpful to me too. I was prescribed Epaderm cream, which is the best emollient I've used (prescribed by GP and have bought handbag size) made of paraffin based ingredients - they do an ointment too. I have a wonderful borage cream from a medical herbalist. And yes Eumovate when it's getting bad and skin broken
You're not alone Cheese love 🤗I get the itchy skin too. Pretty much like the others who have replied I take Piriton every four-six hours. I apply Dermol 500 lotion and I have steroid ointments to use as well.Hydroxy can cause sun sensitivity and you may have it as an actual symptom of lupus. It's essential that you cover up completely with long trousers..long sleeves..wide brimmed hat n sunglasses. We're advised to use Factor 50+ sunscreen but my skin doesn't tolerate sunscreen so I have invested in sun protective clothing easily bought online.
Its essential to avoid the sun's rays at peak times..don't be fooled by a cloudy day either it can still damage us. It's reflected off of snow and water too so we do have to be very careful. It will depend how it affects you personally but I have problems with indoor lighting too. If you go to Lupus UK and scroll down to Eclipse section you'll find out loads about photosensitivity.
Washing powders n soaps/cosmetics could irritate your skin even if they didn't before. Use very simple products with no chemical nasties in. I can't use any soap so I wash with the Dermol lotion as I get it on prescription.
When you shower or bathe don't have the water too hot n moisturise thoroughly afterwards. Pat the skin dry rather than rub with the towel.
Keeping a symptom diary is helpful so you can establish what affects you the most and it helps you formulate your own individual care plan with your doctor.
Keep yourself hydrated..little sips of water throughout the day works best for me.
I hope you find some relief soon it's exhausting and frustrating but it's important that you treat yourself gently during this really tough time 💜🌈 xx
Thankyou for your advice it’s much appreciated.
Hi Cheeselove
Itchiness and rashes can be so difficult to deal with. Just to add to the helpful replies you've already had, we have a blog post which has some tips from different people with lupus about what they've found helpful in managing itchy rashes here: lupusuk.org.uk/coping-with-...
I hope you find some relief soon,
Take care
Debbie
All those symptoms sound like Lupus and I have experienced them at some point. Not sure if you think the Hydroxychloroquine is related to them? I would have thought that to be very unlikely.
Hi, I don't itch too much but I have also become UV sensitive and have hyperpigmentation. I was advised to use factor 50 sunblock all the time, even under my clothes in winter. We have replaced all our light bulbs with led ones as well.
the proliferation of LED lights has been useful as they often specify lumens and Kelvins, the brightness and the colour "temperature". I've worked out how bright and how yellow lights need to be for me, not all LEDs are ok.
My parents need brighter light than me, so we have max 8.8w in LED (equivalent to almost 60w in the old incandescent bulb) at 2700k around the house, then they have daylight bulbs where they sit, and I have a 4.8w over me!
Sorry to hear of the difficulties - I recognise the problems and can see much helpful advice have already been given. Being prickly/itchy is frustrating - I thought from previous experience since I was young I was used to such things, but some more learning to do. Keeping cool helps - and learning to keep calm when I can't be cool. And learning warning signs. I hope you feel some support from everyone's sharing and have some practical options to try out
Hydroxychloroquine made my light sensitivity into to something that I could cope with - the light sensitivity started in a dull January, quite some months before I was put on hydroxychloquine. I still have to be completely covered up, an umbrella is very useful. I have discovered that it's not just UV but brightness and blue light. I wear workwear glasses that are UV and blue light protective and wrap round well, I have a very dark pair if too windy for an umbrella.
I have 200 mg of hydroxychloroquine daily and haven’t found problems with itching. I am very sensitive to the sun though and get bruises and blood blisters very easily. Apart from that I’m tolerating them. Hope you can contact your rheumatologist or her nurse for advice. Maybe reduce to once a day if she recommends that?
Hi
You are not alone. I was diagnosed last year and I take hydroxychloroquine. I often experience itchy skin and I find that I mark very easily. I use Bepanthen Sensiderm cream for skin irritations, including when I had the typical Lupus face rash. I find it very soothing. Exposure to the sun will irritate your skin more so make sure you cover up and use sun cream. I take take antihistamines for the itchy skin when needed. I also use Body shop skin defence factor 50 face cream and P20 factor 50 sun cream for kids. Both are very good and don’t irritate my skin.
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