I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with ..

[Wendy39]

I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with SCLE but this has ended up as SLE?

I was diagnosed with SCLE in October/November 2013. Here are some of my blood test results:

ANA positive (but crucially no level given), ENA positive, Anti RO positive, DS-DNA 3.8 iu/ml low titre, ESR 11, CRP 7, Liver function test – Serum Total Protein 80 g/L (range 60-80). (Apparently the lab they sent my blood to didn't do ANA levels - just negative or positive - which I find weird when we were convinced I had Lupus. Maybe they should have sent them somewhere that did.)

My GP told me that I had SLE when she received the results but the Rheumatologist who diagnosed me, said SCLE, due to no organ involvement and the Anti-RO which is specific for sun sensitivity. He described it as mild lupus.

I was later told it only effected my skin and I would need my hydroxy in the summer months only. I would be fine in the winter. (Ha ha).

Interestingly, most GP's record it as SLE in my notes.

In 2016, following a punch biopsy of the rash at the nape of my neck, my diagnosis was amended by a Dermatologist to "SCLE with Systemic Features." I also later that year had another ANA positive blood test, whilst on 20mg a day and tapering over 5 weeks, of steroids. This all led to me now being on 3g a day of MMF (mycophenolate mofetil) a day (from July 2016 onwards), as well as the 2 x 200mg of hydroxychloroquine.

My lupus effects my skin, hair, nails in various ways. I also get chronic fatigue, IBS symptoms including terrible diarrhoea, headaches of all descriptions and duration, a form of tendonitis in my wrists, I've also had bursitis in my hip requiring a steroid injection and I am awaiting an MRI to investigate possible inflammation of the sacroilliac joints in my back due to spasms and tenderness. (I also have OA in my hips, knees and back and slight background hypermobility, varicose veins and borderline aneamia).

So my question is out of curiosity and wanting to understand my own diagnosis, with the amendments etc.

Can you have SLE with no organ involvement ever?

And how many of you previosuly diagnosed with SCLE, now have SLE?

Thank you for your time.

[kittykat68]

Hi Wendy my scle was diagnosed 7 years ago now I have a crossover of systemic symptoms, I only have lung involvement i do have secondary syjorns though I try not to think of systemic as rhemy says I've got a 1 in 3 chance of developing it,I'm waiting on dx bone scan and I have high rheumatoid levels, I'm on 300 hydroxy /mepacrine/methotrexate plus theusual cocktail of meds hope this helpsx

[Wendy39 in reply to kittykat68]

Thank you for replying. Yes, it's just my curiosity, as some people seem to have SLE with no organ involvement and still sun sensitive, so wondering how they are different to me? x

[kittykat68 in reply to Wendy39]

Because ours is the biggest organ of ur body so yes we have organ involvement, however not multiple organ ie systemic means widespread basically does thst help hunx

[Wendy39 in reply to kittykat68]

Thank you for your patience with me. You are right. Systemic means involving the kidneys, lungs, brain etc - internal organs. As opposed with DLE which just effects the skin, an external organ. Of course SCLE overlaps both DLE and SLE. I have heard varying stats for the chances of developping systemic lupus with SCLE. One doctor told me 19/20% but I think Paul at Lupus UK puts the stat much higher, if I remember correctly, about 50%. There is always something to learn about with this chronic illness. x

[Wendy39 in reply to kittykat68]

I meant to ask you, do you see both a Dermy and a Rheumy? My Rheumy I have nick named the Reluctant Rheumy as despite telling her all was not well at my appointments, she never did anything to help. She never actually diagnosed me either. So actually never prescribed or diagnosed anything for me. My husband says she sees you but she doesn't hear you. Anyway, last year through luck I had a punch biopsy on the rash at the my neck with a new Dermy and he took over my care for 9 months, then left. My Knight. He could see that I was really low, struggling with life on a day to day basis and needed help. I told him my Rheumy wasn't listening or helping and he took the bull by the horns and by July I was started on MMF. Now I am seeing my Reluctant Rheumy and a GP with a Specialist Interest in Dermy - in lieu of a Consultant Dermy. When I see the GP, he says but the symptoms you are telling me about are systemic and should be dealt with by your Rheumy. So going round in vicious circle. I feel that no one wants to take responsibility for my care again. Have you ever felt that with SCLE you are stuck between the 2 areas of "expertise"?

Wendy

[EOLHPC]

Good question

I suspect many of us have had or do have organ involvement without this being officially acknowledged. Consultants have told me they believe my lungs & kidneys, nervous system & brain have been affected by my infant onset lupus....and my daily combined therapy lupus meds do damp down signs & symptoms in all of those organs. And, like you, I share many other areas of lupus inflammatory process. What's more, the skin IS an organ...and my skin is affected too (I actually suspect I've got overlap SLE & SCLE)

Also, as I understand it, your current daily dose of myco corresponds to that prescribed in cases of moderate or high disease activity in the latest edition of the British Society of Rheumatology lupus management guidelines. Hear is a link:

rheumatology.org.uk/include...

🍀🍀🍀🍀 coco

PS 😉

reference.com/science/skin-...

Why is skin considered an organ?

Skin is considered an organ because it meets the definition of an organ, which is a group of related cells that combine together to perform one or more specific functions within the body. Skin performs several functions vital to the survival and health of the body, so deserves the ...

[Wendy39 in reply to EOLHPC]

Thank you for your reply and the info regarding my dosage of mycophenolate - that's interesting. Yes my GP has told me I have CNS involvement with my lupus - due to my headaches but MRI of brain (investigating syrinx) showed nothing and probably an inflammatory bowel disease / process too - due to symptoms. But I'm trying to contro through diet rather than have a camera. Maybe it depends on who you see as much as anything else? Have you experienced organ / systemic involvement since your re diagnosis as an adult? Don't answer if being to nosey! Wendy x

[EOLHPC in reply to Wendy39]

Yes, we know I have active organ/systemic involvement because without my daily oral combined therapy meds all my chronic lupus signs & symptoms flare: Neurological-cerebral, lungs, kidneys etc as well as GI tract, skin, joints etc etc.

Ref the BSR guidelines, my version of lupus + sjogrens is moderate and active...and my meds + their dosage matches that 'moderate' category in this edition of the guidelines

[Wendy39 in reply to EOLHPC]

So, your lupus is active despite your cocktail of lupus meds?

I think the MMF is finally working it's magic for me. The diarrhoea is mainly under control and the headaches are a lot less. My tendonitis is also a lot better - still get a little wrist pain now and again but the shooting pains through from my elbows have stopped. So, I think I am happy to stay on it. I didn't take the steroids from the GP with Specialist Interest in Dermy, as I didn't want to cover how the MMF was doing and I think this was the right move. Thank you for your insight as always. I guess a lot of this stuff the doctors know but don't always have the time to explain it all properly at our appointments.

Wendy x

[EOLHPC in reply to Wendy39]

Yes...and really good experts know there is a lot of this stuff they don't know about...e.g. The consultants at my lupus clinic. Their forthright frankness on how much science doesn't know makes me trust them more than I might 😉

My impression is that my lupus can only be active because when I try to reduce my daily pred various of my chronic signs & symptoms flare...and several years ago during 5 months' pause of daily hydroxy, my condition went downhill & has never quite recovered. However, i remain seroneg (possibly due to chronic malfunction in my bone marrow limiting my ability to make antibodies) and my inflammatory markers are 'relatively stable'

Because I accept there is no cure for my sort of immune dysfunction & connective tissue disorder, and because I'm tolerating my meds + they are consistently helping my to greater quality of life than I've had since my early 20s, I just consider my 63 year old self in palliative care ongoing, with what the BSR sle guidelines class as treatment for a moderate degree of active inflammatory process + cumulative multisystem damage due to a lifetime without daily oral meds for infant onset lupus & early onset sjogrens. Looking at things this way does help me cope

👍👍👍👍I am delighted myco is hitting the spot with you...and I too would've avoided oral steroids for the same reason. Just as I too chose to spend decades lifestyle managing my chronic IBD-type symptoms rather than submit to gastroenterology investigations. And I did pretty darn well at this until 16 months ago 😏

🍀😘🍀😘

[Wendy39 in reply to EOLHPC]

I see, so your years without meds damaged your internal organs and you have struggled to get this all under control after so long. So the hydroxy really does help the fire fighting too.

Great to hear from you. As always. You have such a great understanding of the emotional side of lupus, as well as the symptoms. Where would I be without your help?

x

[Buffy14 in reply to EOLHPC]

Just read your first link although it is mainly relating to non Renal lupus and I have lupus nephritis . I take 360mg of myfortic plus 5mg pred daily . Do you understand the dsdna levels they talk about ? They say dsdna 2+++ for example , I have always been given dsdna as just a number for example my latest dsdna result 2 weeks ago was 83 x

[EOLHPC in reply to Buffy14]

Sorry buffy...I don't understand this...but, in my experience, the symbol + often relates to strength of test result, e.g. Infections rate from least severe + to +++ most severe. Maybe post a question here asking what this means?

🍀😘

[ExtremeDuvetDaze]

Hi wendy39,

I'm undergoing tests at the moment after years of getting worse I was diagnosed with SLE last month.

I am strongly positive ANA anti centromere pattern and positive Anti Ro, I've just had all my bloods done again so waiting on results, I have a slight malar rash and have sun sensitivity on my chest and arms and the sun makes me feel very poorly. I had an MRI brain scan three weeks ago which has shown multiple white matter lesions significant with white matter small vessel disease in SLE I think this may account for some of my cognitive impairment and this awful weird Visio-spacial problem I have , the rheumatologist said he heard basal crackles in my lungs so I've had a chest X-ray and waiting for a lung function test, I often feel as though I can't get my breath, my kidney function has been declining quite a bit for the best part of two years but it does recover only to dip again, no protein or blood in it so probably not to do with Lupus. He also thinks I may have sjorgrens too.

In the last two weeks I've developed some sort of inflammation in my colon, although I'm wheat intolerant and have elements of IBS I've never had anything acute in my bowel so this has been pretty horrible so I'm in the process of waiting for test results and see how I respond to two lots of antibiotics , could this be Lupus related or just age (I'm 56) ? Who knows!? I feel like I'm being bombarded with one thing after another ! Anyway that's where I'm at at the moment and just waiting for tests and results to see if there's any other organ involvement....some good news, I was told my echocardiogram all looked ok 😃❤

Diane🌺Xx

[Wendy39 in reply to ExtremeDuvetDaze]

Hello Diane.

Thank you so much for your reply. I find it very interesting what you say about your MRI of your brain. I have suffered various headaches all my life. Started as a early teen with terrible headaches with my periods. Eye strain headaches when doing school work etc. With the lupus since diagnosis in 2013 I've been told I have migraine, cluster migraine, ground away a tooth in my sleep in 2013 with stress headaches and was given diazepam to relax jaw muscles and ensure I was sleeping with my mouth open, ice pick headaches - as in those short sharp stabbing pains in your head that just happen, take your breathe away with the pain and you can't take pain relief for them as you never know when they will have or if they are a one off or a few over a couple of hours.

In about April 2016 my female GP who I try to see as she is lovely and understanding but frank when she chats to me, said you have migraine with myalgia - indicative of the lupus with CNS involvement that you have. That stopped me in my tracks. My Rheumy and Dermies have never said that kind of thing to me. My Rheumy is so dismissive!

Anyway, later in 2016 I was found to have a syrinx cyst in my spine - later told two areas on my spine where the nerve canal is enlarged but would not be considered significant enough to be called a syrinx - so anyway an MRI of my head and neck was ordered in order to see if the cause of the syrinx was a chiari malformation - it wasn't. The report was brief but stated:

No evidence of acute ischaemia or space-occupying lesion. No mass effect or midline shift. No extra-axial collection. Bilateral tiny frontal white matter high signal could be due to migraine. No hydrocephalous. Brain stem, cerebellum and orbits are unremarkable. Intact craniocervical junction.

I have seen a private Neurosurgeon and he said that the "Bilateral tiny frontal white matter high signal could be due to migraine" was something that the radiologist should not be saying, it wasn't their place and was a clinical finding. He never commented further. But I was seeing him about the syrinx matter and he wasn't a lupus specialist. But I have thought about it a lot.

If the radiologist thought it should be mentioned at all - there must have been something there???

I had a lot of cognitive impairment before the lupus drugs kicked in too. Plus my Rheumy has muttered under her breath a few times that I have possible vasculitis. So when my Dermy gave me two drug options last July, MMF or Azathioprine, my husband and I considered it all and goggled and I choice MMF as it said it treated vasculitis as well as lupus. I thought it might be good for me, even though the doctors have never documented their thoughts about the vasculitis.

I have considerable varicose veins - since about 17/18 and they are a lot less painful on the MMF too.

So the same GP saw me in November 2016 re the diarrhoea and it was her who said you obviously have some sort of inflammatory bowel disease going on. I can ordered a few tests and a camera but it will tell us what we already know. Luckily since then the MMF seems to have fully kicked in and with a few changes to my diet - when I can and have the will power to avoid too many veggies - this seems to be more under control.

So the GP tells me - lupus with CNS involvement and inflammatory bowel disease - but the Consultants - don;t ever mention this and it isn't in my hospital records.

Which is partly why I ask this question.

Thank you again for replying and your insight. Will you please let me know how you get on with your tests and follow up appointments?

Wendy x

[ExtremeDuvetDaze in reply to Wendy39]

Hi Wendy, it's interesting to read your story, I'm glad you're getting some results with MMF. I forgot to add that I have been a chronic migraine sufferer for the last fifteen years and suffered headaches since I was a teenager, for a long time now I've said to my husband that I wished they would do a brain scan because the way I feel in my head isn't normal! So when the rheumatologist suggested an MRI I nearly cried! I haven't seen the actual report just a copy of the letter he sent to my gp asking her to put me on a daily aspirin but she's told me not to start it until my gut settles down! One of my greatest fears is having a stroke!

When I've had all my tests I shall ask for copies of all the results so I can put them in my file especially as I'm being looked after in a neighbouring trust and I don't believe they share info across the trusts here, if I end up in my local hospital they won't have a clue what's going on with me!

Going back to migraines I've suffered all kinds of treatment including two lots of Botox 3 years ago of which the second lot made me very ill and it's since then that I've not recovered, they say it rarely affects you systemically but it was strange how two weeks into it I was completely floored and ended up having a year off work and in the end having to give up my job. The only drug that works is Imigran but a year ago I had a daith piercing as I'd heard that it can help migraines, I had heard of a piercing place where they were doing a study, it's the only thing I've tried that has altered the pattern of my migraines and for the first four months I only had 7 as opposed to approx 36 ! I still get them sometimes every couple of weeks and sometimes up to 3 days but I have more warning and they're not 'BANG full on I want to kill myself' type migraine when I wake up in the morning like they used to be! It's really strange I have no idea how it works but it's made such a difference! If anyone asks me if it was worth it I would definitely say yes without a doubt.

I'll let you know when results are through, I've got a tv u/s next week to check my left ovary where I'm getting the pain to rule out any ovarian involvement.

I shall talk to my rheumatologist about bowels and Lupus in fact he did ask me if I had any bowel problems ( before this episode) I told him about IBS and he was interested in how long and how it affected me etc.

Take care

Diane🌺Xx

[Mifford]

I was diagnosed as SLE about 5 years ago now I think (I keep losing track of time!) it have no major organ involvement although I am now asthmatic when I wasn't before so not sure if that's the "lupus effect". I think my anti RO is classed as normal as well (whatever normal is!) yet I'm highly photosensitive and have a separate severe photosensitivity with solar urticaria to all visible light. Not sure if that makes me unusual in diagnosis terms maybe

[Wendy39 in reply to Mifford]

I have a friend who has SLE - started when she'd had her 3rd child and had kidney involvement at that point - but she has severe photosensitivity with the urticaria and she sees an immunologist in Cardiff, rather than our local Rheumy and she gets excellent care. Strange how we all have the same disease but such a different bag of problems and our treatment can vary so much! There is always so much to learn about our illness and how to cope. Love this site and the fact that we can share and help eachother out. Thanks for replying. Wendy

[Fennella02]

Hi. I agree with EOLHPC about the significance of your Mycophenolate dose - people with 'mild' disease do not take that amount. I know nothing about SCLE but, if it is any comfort, I have had lupus for over 25 years (much of which was unmedicated) and it is only in the last 4 years that my lungs have become involved. I have had prolonged spells of severe headaches and proximal myopathy which are attributed to lupus but not CNS lupus. Take care. Clare x

[Wendy39 in reply to Fennella02]

Thanks Clare. I think lupus alone is a mystery to some doctors and with our sharing and reading etc we often have a greater knowledge and understanding than they do. Yes, my headaches have lasted weeks on end at times and that is so debilitating! Terrible. I don't think I have CNS Lupus but like you said lupus with CNS involvement. Luckily for me the MMF has kicked in and the headaches are a lot less. Best wishes. x

[lormiccro]

I was diagnosed with SCLE last year, quite by chance. I have a terrible reaction to the sun, have done since I was a teenager, I'm now in my 40's. I was prescribed hydroxychloroquine for the summer to help with my SCLE. What I wasn't expecting was how I would feel while taking the hydroxychloroquine. My energy levels improved, pain in my hands, feet & especially my knees improved. I was diagnosed with IBS a few years ago, I too have unpredictable episodes of diarrhoea I also suffer with migraines & was diagnosed with tinnitus & balance issues probably down own to a mild case of Ménière's disease several years ago, I take medication for this all of which improved while taking the hydroxychloroquine. I have been referred to see a rheumatologist and have my first appointment next week! I've no idea what to expect.

[Wendy39 in reply to lormiccro]

Hello lormiccro!

There aren't many of us on here with SCLE. So pleased you replied.

It sounds like you are at the start of your diagnosis journey. I hope it is a smooth and good one for you, with great doctors.

Isn't it funny how with hindsight you can see how things develop through your life time?

Although I think I had a major flare in 2009 that went undiagnosed, the next big flare was 2013 and led to my diagnosis. But I have various allergies and asthma and eczema as a child. Plus REALLY REALLY bad travel sickness. I would throw up the moment we set off. So as a child when we went to Cornwall, on the old slow roads from Bristol and were in the car for hours, it was hell for me. I am still a terrible traveller now and when my lupus wasn't completely under control it came back with a vengence! I went on a school trip - coach journey - 10 mins down the road only to a local castle - I wore travel bands and sat at front - felt as sick as a dog - don't know I managed to stop myself being sick in front of the children and to top it off felt sick and dizzy for the rest of the day! I had to be brave and when I got home lay down in bed as still as I could be and still wasn't 100% the next day. I think that there is a link for me - some sort of balance issue? But never been confirmed or looked into. I also remember burning nadly on the beach as a child and no one else suffering but my parents not thinking anything of it - they didn't know about lupus then, did they.

Anyway, i can totally relate to you headaches, IBS & diarrhoea symtpoms and aches and pains. I have had a form of tendonitis in my wrists on and off since 2013. I also have OA in my hips (already had one operation), knees and back. Considerable varicose veins - since aged 17/18. Background hypermobility and borderline anemia. These things never come alone do they?

I would love to keep in touch and please ask if you have nay queries or concerns. Like I said, not many SCLE sufferers on here. We're quite a rarity.

Good luck.

Wendy

PS I'm 42. Arghhhh. Ha ha.

[Lambassador]

My 34-year ol, learning-disabled daughter was diagnosed with SLE around seven years ago now but this came about through her having a very large blood clot in her thigh, which led to a bad rash on her leg. It was while the rash was being investigated that they came up with the SLE diagnosis. So from what I read not a normal route to diagnosis. She has always had abnormal fatigue and never liked the sun so maybe she had it and something in her body told her to avoid the sun - who knows. However because of the blood clot her haemotologist told me to make her walk a minimum 5,000 steps daily and funnily enough this seems to have made her fatigue somewhat better. She still retires to bed in the afternoons sometimes but not greatly. She was put on hydroxychloroquine. Since diagnosis she has had random, but fairly mild, pains, generally in her hand or wrist but occasionally in other body parts, headaches but we've never been told these are lupus related, and has a bald spot in her hair. Apart from that, nothing (fingers crossed in stays that way).

[Radiantr]

I'm very sorry to hear that I know how you feel with so many results and diagnosis that leaves you confused and still you feel like why me?? I'm also In the process of being diagnosis still they are not sure what's wrong with me. My new diagnosis is seizures while I sleep , making my condition worse because they can't give me anymore pain medication for my severe body aches. I'm getting rashes on my chest, hair loss, severe headaches, memory fog. Is so complicated I just feel miserable. People don't really understand what we are going through unless they are in our shoes. All I can say to you Wendy39 is keep researching and don't give up until you have fully answers. Someone who understand what you are going through. Radiant r 45

[Pooley66]

I have SLE which was diagnosed when I was living in Spain. Unfortunately it wasn't until I came back to uk it got sorted. I am on 200 hydro twice a day. My skin rashes has now gone although I now have some white patches. I do not take prednisone any more, thankfully. I use factor 50 and a hat in summer. Can I recommend Tom O'Bryan the autoimmune fix and Amy Meyers the autoimmune solution

[Wendy39 in reply to Pooley66]

Can I ask, have you ever had kidney or internal organ involvement? Systemic illness? Or was it just the photo-sensitivity that led to your diagnosis?