I thought that SLE Lupus deals with the organs. But as I said, I have Chronic Lupus (skin) taking the Hydrochloride. Please can you explain. I would myself, but my phone, laptop etc, are not working properly. As soon as I get a new phone I can then join the Lupus group.
Teanna
Hi Teanna ,
I'm assuming that you have been diagnosed with chronic cutaneous (discoid) lupus? Is it hydroxychloroquine that you are taking? This is commonly prescribed for people with lupus of the skin and it tends to be quite effective.
You can read more about skin involvement in lupus and the treatment options in our booklet at lupusuk.org.uk/wp-content/u...
Did you have a more specific question?
Hi Paul, thank you for your reply. My gp is not really knowledgable regards my illnesses. Although she very understandable, but she relies on my consultants, and professors, and their reports etc. I asked my GP about my Lupus but I get the basics, she would always tells me to ask the docs at the hospital. But the creams are not working, so I’ll have to wait to see her (I don’t know when that will be)? But every creams etc, does not work.
Again thank you.
Teanna
The skin is the body's largest organ, I believe . I'm sorry to hear you've been diagnosed with this. Hopefully the hydroxychloroquine will help.
Hi, Thank you very much. But as soon as the UV’s starts (I skin starts to flare), I’m using my creams on my face and it keeps it at bay, but it’s very expensive, just a small pot of the day cream is £47, and that’s the cheapest. So every 2/3 weeks, I pay just over £200. But that does not include my body, I’m yet to find one. When I told my dermatologist, she told me to give it time, well it’s coming up for a year and was due to see them, but I gout a phone call from UCLH cancelling all my appointments, so I’ve nothing for my legs and arms. Luckily I had a UV awning put outside my door and it covers the strip of the garden and 3m wide, so at least I can’t go into my garden.
I thank you again
Teanna
Teanna - yes that does sound like a lot of money. I use a very high factor (100) neutrogena sunscreen that works for me (so long as I am careful) and is much less expensive ( I don’t want to advertise but try Amazon). And there will be lots of other people here who have useful suggestions about sunscreen too. In terms of the the skin beyond my face and neck, I find it better to simply stay covered up and stay out of the sun as much as possible. I know this is not fun, but an itchy weeping lupus rash is even less fun. Hopefully, you will be able to get some sunscreen on prescription when this is all over and you get your appointments back.
Hi, thank you for advice. I do have a sun screen by the dermatologist )Anthelisos), but it’s the creams like Betnovate BD, Dermol, and the moisturiser, I have to apply these before the sunscreen. I have tried different creams from the dermatologist, but nothing works. My skin is so delicate and dry I just could not find any creams what was suitable, so I’m having to pay for my creams which does the job. (Clarins). I’ve sent off to different company for samples but none of them agree.
Thank you, Keep safe
Teanna
Hi sounds like you are very sensitive & may need more autoimmune meds to dampen down your rash if it is still going a year later.
I have SCLE and once on hydroxy it calmed down in a few months, but also have Sjogrens and eventually due to ther symptoms additional medication..
I treat the sun as an allergy, certainly until it was under control. So in addition to sunblock I cover up...hat, gloves, sun jacket if summertime, sun uv shirts etc.
Don't sit outside in middle of day, watch out for reflective light etc. You need to figure how sensitive you are to uv...if you are having fatigue, foggy brain, sudden or long-term rashes, etc. To dicuss with dermy or see a rheumy...
I use coconut oil as moisturer, less expensive & can be used in microwave...I do have other moisturizers, but coconut oil certainly (organic) cheaper & works for me...
Hope you get it under control soon.ml
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