Subacute Cutaneous Lupis, Do you have this?

I am starting to wonder more and more, how many folks have subacute cutaneous lupis vs systematic in the UK?  I have been trying to find out more about it and I recently cut back (as advised) on my hydroxychloroquine for winter and in a couple of weeks, I started to get flu like symptoms, aches and feeling absolutely 'wiped out' and this was without UV exposure (so had not yet moved to my skin).  I am back on my normal dosage as It was obvious that reducing my medication was not working.  I understand lupis is individual, but there must be commonalities and experiences that can better prepare me to deal with it.  Areas such as tiredness, hiding from the light, not being able to finish sentences ie a flare up, other auto immunes beginning?  Trying to juggle work, studying for a qualification and trying to balance this with a family life, all so challenging.

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  • Hello maggielee! I have SCLE. I'm not pleased you have it but it is good to hear from someone else who has this very specific diagnosis, if you know what I mean. I am 41 years old and was diagnosed about 2 years and 4 months ago - end of October 2013. Although like most Lupies I think this goes back to around the birth of my 3rd child and the hormones in 2008 and the stress I suffered subsequently, to where I was spiralling down hill through 2013. My allergies were also out of control. I am still learning about this diagnosis. I read, and still do read, as much as possible to understand my diagnosis and I think this is crucial, as I quickly realised that GPs do not know much about Lupus at all. You have to be pro-active, even if the medical profession do not really like it. I also joined Lupus UK right away and between their magazine and this site, I have been helped and supported so much. This site has been a life line. I have thought from the beginning that I have SLE. I fit the criteria. I do not understand why I do not have that diagnosis and that I have SCLE. I do have the specific positive blood tests that lead to the SCLE diagnosis, ANA and ENR Anti RO. But I fit the criteria for SLE. My GPs always write SLE and systemic lupus in my notes. I get numerous skin problems, I am sensitive, I get migraine / cluster migraine, I had a positive ANA blood test, I have aches and pains, I have a malar rash, I have hair loss and thinning, I have chronic fatigue, I have problems with my nails. When I was diagnosed I had dizzyiness, depression, brain fog and memory problems. Since being on hydroxychloroquine 200mg x 2 a day the dizziness, depression etc has got much better but I am not 100%. I find it very frustrating at times that I do not have the energy of my former self. I used to love summer, now it's a season of dread and hiding, to survive. I had a skin biopsy of a rash on the nape of my neck at the end of January, over 8 weeks ago now and I am still waiting for the test results. It was a biopsy taken for the Lupus Band Test, which takes 3 weeks so I am not sure where my results are despite chasing. I am not sure what the results are going to say, although since then I have googled rash at the nape of the neck (not sure why I didn't think of it before!) and it appears to be a symptom of SLE. Another anolomaly  of my diagnosis. The rash on the back of my neck has been present since around 2008/2009. So fingers crossed the test results will be with me soon and this will confirm a diagnosis I guess. Anyway, the first year I was on hydroxy - started in November 2013, by March 2014 my rheumy told me to reduce my hydroxy to 200mg one day and 400mg the next, on alternate days, as soon as we hit October as the summer would be over and we could reduce it over winter. Well by Christmas 2014/New Year I was going downhill drastically. I upped my dosage back to 200mg x 2 a day and wrote to the rheumy to tell her all about it. She wrote back saying that she couldn't see me any sooner, (even though I was having a flare) and that it was fine to be back on initial dosage. I eventually saw her in June 2014. My GP did not what to do with me. They still don't. I have stayed on the 200mg x 2 a day. I think she, my rheumy, under estimates the symptoms of SCLE. It has a daily impact on my life. She wants to discharge me at my next appt - 12th April. Luckily the Dermatologist who did my biopsy - first time I have seen him in January this year - seems to be knowledgeable and said he would be willing for me to go on his list permanently. He is the first Dermy I have seen that I have faith in. Let's hope I am right. From what I have read, SCLE sufferers should be reviewed at least annually by a rheumy. 20% of SCLE sufferers end up with SLE diagnosis and organ involvement, which is higher % than those with DLE who end up with SLE. I have had two flares since my last rhumy appt - September/October 2015 and January/February 2016, with new symptoms but my GP refuses to treat me with anything other than pain relief, unless I take a blood test and it gives a positive result. What are the chances of that???? I have rambled long enough. Sorry. I also have osteoarthritis - hips and knees, slight hypermobiity, varicose veins and venous eczema and anaemia. I would love to hear more from you. Happy to chat here or private message me. There are others on here with SCLE but I will have to look back at my posts for names. Best wishes. Wendy  

  • Good to hear from you Wendy and thank you for sharing some of what you are going through.  I was diagnosed about a year ago, first symptoms about two years ago and I was getting progressively worse during the first year to the point where my skin felt like it was burning and the rash that started on my chest spread to my face, neck, then to my arms, back and legs (not a pretty sight and I was able to cover most of it ie or is that hide it).  I hid from the sun when I saw the rash on my arms, it was all the other symptoms I didn't realise were associated with the rash, I thought I was just allergic to the sun.

    I am fortunate that my rash was 'classic' text book in appearance and that a diagnosis was more forthcoming (I was pretty bad by that point) took a year in all to get the diagnosis.  Problem is that all the other symptoms, don't seem to be taken into account and that the autoimmune problems are still developing, so getting other symptoms/autoimmune Sjogrens, Raynaud's,  as well. 

    Today for example, I drove for a few hours and wearing 50 factor, I ended up with red cheeks and feeling of burning (it was the only part of me that was not covered in layers).  If I cannot finish sentences in the next couple of days, as I am trying to remember words, I will be delighted, as it is one of the symptoms I am trying to find if it relates to exposure to the sun and part of SCLE?

    As I was bounced locally from a Rheumatologist last year to a Dermatologist (who has not confirmed his knowledge or lack of in regards to Lupis) and I waited 9 months or so to see him.  Not feeling reassured at all, nor getting any advice about all the symptoms that are cropping up, the standard saying is stay out of the sun. 

    I have only heard of one other person here in the south and I know someone who knows someone, who had it and lived in the north, so with you, that four of us.  Maybe more in England...

    I decided this week to treat myself and to buy an umbrella to hide under this summer (just a little though) as an experiment, I miss being in the garden so I thought I will dare it.  How folks to it in sunny places I do not know and gosh how delighted I am when it rains and is cloudy. 

    I have not figured out lots of other things, it would be good to share any tips (also purchased some sun shirts to try and prevent having to wear layers during the summer and help with overheating, especially when at work)..  so much to learn... Best to all, Maggielee

  • That should have said I am sun sensitive. Not just sensitive. I think I was half asleep! X

  • Hi maggielee,

    The lupus encyclopedia states;

    "While all people who have acute cutaneous lupus also have systemic lupus, only 50% of people who have SCLE also develop SLE. In addition, the severity of the systemic lupus overall tends to be milder compared to SLE patients who do not have subacute cutaneous lupus."

    I'm afraid I don't have figures for the numbers of people with subacute cutaneous lupus in the UK.

    We have recently published a couple of articles on our blog which you may find helpful;

    Managing Fatigue - lupusuk.org.uk/managing-fat...

    Coping with Brain Fog - lupusuk.org.uk/coping-with-...

    We also have a section of our website which has loads of information and advice for people who are light sensitive - lupusuk.org.uk/eclipse/

  • Thanks for the information. I thought my chances for systematic lupus is 10%? Do SCLE folks always battle with brain fog & fatigue? My local doc thought the brain fog was hormonal... I am trying to see when it flares up is too much UV light or not…..m

  • Hi maggielee,

    I can only go by the information I have available in the book I'm afraid. Do you know where you heard 10%? There are two different types of SCLE (psoriasiform/papulosquamous SCLE and annular/polycytic SCLE). People with the annular (polycytic) form of SCLE appear to have milder SLE and are less likely to develop kidney or brain involvement. 

    Did you see our blog article about Brain Fog last month? lupusuk.org.uk/coping-with-...

  • yes thanks I did see the blog. Do you have any books or articles that could explain in more detail about the two different SCLE's.  I will try to find out which I have.  Maggielee

  • This article on the Molly's Fund website has a bit of information about the two forms of SCLE - mollysfund.org/2014/07/cuta...

  • Many thanks will have a look. M

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