Confused!

Hello everyone :) I'm new here, lots of questions! I had a punch biopsy that confirmed subacute cutaneous lupus, I was told this was a good thing and I'm lucky my bloods don't show full lupus??

They said it will only affect my skin, I'm extremely photosensitive! :( but I don't get why I'm so poorly all the time? Swollen joints, tummy troubles, hair loss, dry eyes, severe tiredness, chest pain with dizziness and very breathless just to name a few, I'm not feeling 'lucky' at all? Bloods are relatively normal other than always very low vit D, very weak ANA, and positive D -dimer? Told to basically keep out of the sun and run along by my rheumatologist, but I'm not functioning as a regular human most days lol

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  • I am in almost identical situation to you! I've been putting off writing on here about it because I didn't know how to word it. so thanks! I've not seen rheumatologist yet but I was referred not by my Dermatologist but an Orthopaedic Consultant when an MRI of my shoulder revealed only slight arthritis. It will be interesting what the experts on here think.

  • Indeed! It's very frustrating, my doctor although sympathetic looks at me like I'm losing the plot lol

    I'm also hoping someone might have some insight :)

  • I rarely see my GP, I wait until my hospital appointments come round, they don't like difficult people like me down there lol.

  • Oh how true this is!! I once asked my GP for a repeat prescription and she asked me what it was for as she'd never heard of it!!!

  • Hi both, it is a strange thing to hear someone say 'just stay out of the sun' or your some of your bloods are within 'normal' range and your exhausted and feeling unwell and cannot finish a sentence or losing your hair. I felt this with a rheumy nurse just the other day discussing my recent blood results which i couldn't understand over the phone and her comparing my autoimmune with another type instead of just acknowledging a change in ones life and that avoiding UV was not easy or nice (still finding my words too). That SCLE may evolve and other secondary autoimmune problems may arise -for me, Raynaud's and sjorgrens, added to high blood pressure, problems with thinning bones or headaches. That each of us with the same diagnosis have other variations of problems, that no one person seems alike to another. This does not include the flares, if you over do it and how that is for each of us, ie flares or how to get enough exercise without having to pay for it later (from overdoing it).... Nor how to explain this to your love ones.... To describe the type of tired your feeling, or wearing lots of layers to prevent uv exposure so much so you overheat on warm days or that the blue skies are lovely - at a distance - indoors, that you need to rest all day because you jUST don't feel good....

    Am I grateful not to be worse, yes and that I have some medications that help me to have some quality of life , yes. That my system is not attacking other organs, yes.. That as I read others posts in this forum that I feel I want to give them big hugs and wish them well and thatched I may understand a fraction of how they feel and really hope we all will get better or feel better, yes everyday....

    I learned a lot from lots of folks in my life time and why I now have the challenge of having subacute cutaneous lupus is a mystery and a huge learning curve. For you I hope that the meds prescribed such as hydroxychloroquine will help, that you may find some answers here how to cope with lupus in your day to day life and share your experiences so maybe we can learn from each other... 😁 ml

  • I too have exact replica of you how strange and was nice to read maggieleereply to you At present I'm on high dose of steroids and hydrochloxx and face looks so so big and swollenx

  • Hello, Anyac81. Reading your post took me back to my own diagnosis. I'm sure at the moment you feel you're the only one with this problem and no one understands so I can assure you that on this site you're among friends who understand completely what you're going through. Yes, the advice 'keep out of the sun' sounds so simple but even here on the east coast of Scotland the sun does shine! I think the only answer is to use high factor sunscreen (which you should be getting on prescription) every morning as a matter of course and wear long sleeves, trousers and a hat. And remember the sun shines through car and bus windows etc etc etc. Are you on any medication? Most of us on this site take hydroxychloroquine as a first treatment then various other medications. There's lots of info here so have a look around. Good luck.

  • It's comforting to see I'm not going crazy! Lol

    Thank you for all the replies :) I have an appointment in may to start the hydrox but I'm very worried about the horror stories regarding eye sight, I will start taking it of course, I know everyone's different so I'm hoping it will be ok, I see a different rheumatologist this time so keeping fingers crossed he will be more understanding! Stay out of the sun literally doesn't quite cover it x

  • Hi Anya. I'm have suspected SCLE and was recently diagnosed as Undifferentiated Connective Tissue Disease (of which SLE and its variations are a part of). Yours and Magielee's posts are exactly how I feel. Yes, SLE seems to bring horror stories and yes I'm happy i dont gave thefull form of it (yet-touch wood) but it's not by any means an easy diagnosis! "People say oh so it's okay then. Just think positive!" and i'm like "but this is not normal and can develop into other stuff and new symptoms seem to appear one after the other! Plus..i need to hide from the sun!! Do you know what that means!" It's so depressing! I never feel 100%. There is something bothering me! So far i've not had major issues. Just had a suspicious rash (ubiopsied) rash, a burning face that lasted 2 days but that seems to be more likely to do with dry skin (dermo says), some vasculitis symptoms, anxiety (but have always been a bit anxious) chilblains, mild ?muscular chest pains for a week, some sort of nerve issues ( ?periferal neroupathy -fingers or toes hurt for a minute or so every now and then-had this forever). All but the nerve things have come and gone and not come back but i only was diagnosed last autumn... the only thing i'm struggling withat the moment is with a heli bacter pylori infection that has not gone plus some sore throat-difficulty swallowing that kinda comes and go and seems more pronounced when my postnasal drip which appeared during last year's pregnancy alongside a chest infection cough/sore throat for 3 months. Not sure if any of this is related to my diagnosis as lupus can mess up with anything in your body it seems but it alsomight not do!! Argh! Husband has privat insurance so i'm going to get referrals for ENT and Gastro as i need this sorted asap. In any case, stay in touch, you are not alone! Hope your appt goes well and meds help you symptoms! Check the posts re suncreams in here for advice on what to do. I dont fully cover up but i make sure i have a good suncream on all the time in exposed bits. If out in the sun for a bit i wear hat. Try to avoid midday sun if you can but i don't always manage it. Depends on how sensutive you are tho. You might have to be more careful than me. Take care X

  • Hi Thereisalight

    I was interested reading your post about your symptoms because I too am UCTD diagnosed!. I get chest pain and peripheral neuropathy and just want to say that there successfully being treated by anti inflammatory medications!. If your chest pain reoccurs it should be evaluated by a doctor or your Rheumy.

    Good luck with ENT and Gastro referrals. Heliobacterpylori can be successfully treated with antibiotics!. Hope your better soon. X

  • Hello Anyac81.

    I wanted to reply when I saw your post last night but was too tired.

    I can relate to you post. I haven't felt very human for a while. In fact the best I ever feel is when I am on steroids, (only 3 courses since diagnosis but my best moments!) otherwise I feel that I barely function as a mum and wife on a daily basis. It's a very cruel disease! If you are just diagnosed, it is a shock and a lot to take on board. I joined Lupus UK straight away and this site, which has been my life line and kept me sane. People here are kind and supportive and really want to help.

    I have SCLE and was diagnosed in October/November 2013. I went to my GP saying my husband thought I had lupus and luckily for me she agreed and got all the relevant blood tests done. I was confused by it all from the very beginning. She told me I had systemic lupus, as my bloods came back, positive ANA (but annoyingly no level given), positive ENA and positive anti-RO. Which apparently is the combination for our type of lupus diagnosis. Then I saw a Consultant Rheumatologist who said I had SCLE and it would effect my skin only, it was mild and I would only probably need to be careful in the summer etc. Like you, initially I thought well, he's the expert and it sounds like I got off lightly really.

    I had already suffered symptoms whatever the weather and although I knew I was photo-sensitive there was more to it for me. As well as all the skin issues - so photo-sensitive, sores and crusty wounds on my head, hair loss and thinning, sores in my ears and behind my ears, sores in my nose, the malar rash, I also had chronic fatigue, headaches, depression, anxiety, brain fog, memory issues, aches and pains (but not RA), chest/rib pains, nausea, dizziness, night sweats, swollen lymph glands and IBS type symptoms, especially diarrhoea. So I knew that my lupus wasn't just effecting my skin. But when you research SCLE it does say that sufferers do fit the criteria for SLE as well. So I was confused from the off. GP says SLE and Consultant says SCLE. But to be honest I felt so awful at that point, I was glad to get a diagnosis and start on the medication and it was a relief to be taken seriously.

    My letters say different things too, some say SLE, some SCLE and others just lupus! But really the hydroxy never got on top of it all. I had a really bad year last year, but for 9 months of it I had a great Dermatologist and he moved things forward for me. He did a punch biopsy on the rash at the nape of my neck, (I'd had that for about 8 years at that point and in fact the 2 dermatologists I'd seen previously said that it wasn't lupus related but they didn't know what it was!) which showed active lupus disease at all layers. So my diagnosis was amended to SCLE with Systemic Features, which I have never heard of before and seems bizarre. He put me on steroids first of all, which had an amazingly positive effect on me and this lead to me starting 3g a day of MMF as a steroid sparing agent.

    Unfortunately for me the local doctors that now care for me, do not really understand this disease and I am now paying privately to have my diagnosis confirmed, the treatment plan confirmed and also advice on dealing with flares (plus advice on my iron levels and vitamin D). I am travelling to London for this appointment this Friday. It may be that the lupus expert I see confirms SCLE with systemic features and says that my treatment plan is correct, but at least I will know once and for all that I have done everything I can and must accept things as they are. But, maybe he might change things for the better, who knows, we'll see.

    I posted recently about sun protection rash vests and I met a few SCLE sufferers who are new to me here. I'll post the link to our discussion below. It's lovely to be able to meet fellow SCLE sufferers and compare notes.

    Unfortunately for me, in the 3.5 years that I have been diagnosed I have only ever had 2 positive ANA blood tests, once at diagnosis and the second last year, which was significant for me as I was on 20mg of steroids at the time ( ANA 1:80), so I was flaring during the summer.

    The sun is definitely a trigger for me, but it is not my only one, I think stress, hormones and also my allergies hayfever, pet dander and house dust are involved.

    My Rheumy seems to go on blood tests alone and so it has been a bit of a battle to convince her I have been very unwell or had a flare for example. But the research I have done says that there is no point in re-testing SCLE sufferers routinely for antibodies after diagnosis. It rarely shows up. Once the diagnosis is made, the doctors should rely on symptoms alone. I wish my Rheumy knew this!

    As for advice, I would say, keep a diary of your symptoms. I have done for a year now. I use a blank note book and write every day, how I've been feeling, what pain relief I've taken, if I've had a nap or spent all day in bed etc. I also take photos of my skin issues, because sod's law they have cleared up by the time you see a Dermy and I get those printed off and take them with me to appointments. So I take the diary and the photos to all Consultant appointments. This can be handy, as with brain fog you can forget the details yourself.

    I will finish here, as I've written a lot. Here is the link to my post re sun protection.

    healthunlocked.com/lupusuk/...

    Finally, if you are unhappy with your Rheumatologist and they aren't a lupus specialist, contact Lupus UK or look at their website, as they can recommend lupus specialists closest to you or tell you where your nearest Lupus Centre of Excellence is.

    Stay in touch and my very best wishes.

    Wendy

  • Hi Wendy

    Just want to wish you lots of luck for your BIG appointment on Friday!. Do hope it goes well and you get the advice and treatment you need!. Fingers tightly crossed for you as know how important this is for you. X

  • Thank you so much misty14! How kind of you. Strangely, I'm excited. Will post and let everyone know what he says. Wendy x

  • Go for it Wendy. Will look forward to update. X

  • Everything you've said you could be writing about me , my husband has just been given the boot at work because of taking too much time off to look after our three year old when I couldn't :( trying to explain to friends and family it's not 'just a skin condition ' is proving difficult, I'm getting the brunt from my husbands family for him losing his job because of me needing him home more and more this last year :/ were hoping his next employer will be more understanding.. it was my OT that told me about this forum, I'm so glad she did! I hope everyone in the diagnosis stage gets the help they need, it really does effect everyone in a family, I know it could be worse, it is for some poor souls and I am thankful everyday , but lupus really does suck in all of its variations x

  • Hi Anyac81 ,

    Welcome to the LUPUS UK HealthUnlocked Community!

    I am sorry to hear that you have been feeling poorly. Have you discussed all the additional symptoms you mentioned here with your consultant?

    If you are unsatisfied with your current diagnosis and treatment plan and feel that all of your symptoms aren’t currently explained, perhaps it would be best to ask your GP to refer you to another rheumatologist for a second opinion? It may be best to get referred to someone with a specialist interest in lupus. If you let me know what area you live in I can provide you with information about any lupus specialists we know in your area.

    We offer a free information pack which discusses the symptoms and diagnosis of lupus which you can download or request here: lupusuk.org.uk/request-info...

    Subacute cutaneous lupus erythematosus (SCLE) occurs in two forms. According to The Lupus Encyclopaedia, “SCLE always worsens with exposure to light, and, in fact, there is even a case in the medical literature of it occurring from exposure to a photocopier machine”. We published a factsheet on ‘LUPUS: and Light Sensitivity’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

    Wishing you all the best, let us know how you get on.

  • Thank you :) I'm still in the learning stages at the moment so I'm reading everything I can get my hands on! I am in West Sussex, speaking with a rheumatologist with an interest in lupus would definitely be helpful, I've moved areas recently and my previous rheumatologist said she didn't really know a great deal about it shockingly

    Many Thanks :)

  • Not all rheumatologists do have an excellent understanding of it because it is an uncommon condition and they may have specialised in other autoimmune disorders.

    Depending on whereabouts you are in West Sussex, your nearest specialist could be Dr Brenda Stuart at the Princess Royal in Haywards Heath or Dr Fiona McCrae at the Queen Alexandra Hospital in Portsmouth.

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