Discoid lupus??

[Clairesager]

Waiting for possible lupus diagnosis. Shared this photo yesterday but didn't get much response. Does this look like lupus on my scalp? About the size of a 2 pence, very scabby and permanent bald patch. Had this for over 15 years. Thanks

[Wendy39]

Hello! I'm on my way out of the door on the school run. I'll message later. I promise. Not ignoring you. X

[Muskin in reply to Wendy39]

Hi my name is ernestine brown try this cream mometasone furoate asp,0.1% you put a little on the legions everyday keep scalp just put on affected area-use Kerigan shampoo and conditioner makes hair grow remember everyone lupus not the same.good luck ernestine brown Los Angeles,ca

[Muskin in reply to Wendy39]

Okay Wendy 39

[Wendy39]

Hi. Back now. I wanted to reply yesterday but ran out of time. I was very behind on everyone's posts. There seems to be so many new people, which is great but it's proving virtually impossible to reply to everyone. So, welcome.

I saw your photo and thought "wow that looks sore". You've had it for 15 years? What does your GP say? By the way, keep that photo, as a record.

None of us are medically trained here (well a handful are former nurses etc but most are just fellow lupies) and can only discuss our own symptoms and offer support. We can't diagnose anything. But hopefully if I share some of my lupus experience, it may help you with your situation. You are certainly not alone.

The average lupus diagnosis takes around 7 years. Mine took over 5 years. 2008 to 2013.

I was (wrongly) diagnosed with SCLE in October 2013 by my then GP and it was confirmed by the rheumy in the November. I immediately started on hydroxychloroquine, 2 x 200mg a day. I had never heard of lupus up until then and it was actually my husband who worked it out and I went to my GP and said this is what I think I have. In hindsight I had been flaring for the best part of 2013 and the photo sensitivity was becoming very obvious, even for me.

I have only ever had 2 positive ANA blood tests. At diagnosis I had a positive ANA, ENA and Anti-RO. My DS anti-DNA was about 3.8 which is not a concern. the highest that has been in 6.8. So bloods have never told the full story for me. You can have sero negative lupus.

If I include be wrongly diagnosed by the rhuemy until I finally got the correct diagnosis this April - SLE - my journey was really over 8 years. But my situation has been unusual in that I am in Wales and my health board has prevented me from getting a second opinion from a lupus expert.

Anyway, I had been suffering from sores on my head for years. With hindsight again, my lupus was triggered by the birth of my 3rd child in 2008. I had suffered sores on my head, photo sensitivity, depression, fatigue etc since then. However I also had a life time history of eczema, asthma, heyfever, allergies to dogs and house dust etc. I also had OA in my hips and required surgery in 2013. So this muddied the waters too. I had visited my GP at various times re these sores on my head, but never really solved the problem. I had just been given various creams and scalp applications.

At diagnosis I had the malar rash but in hindsight I can see it from about 2011 in photos of myself, maybe even 2009.

As well as the tender, crusty sores on my head, by 2013 I had developed sores inside my ears and crusty dryness behind my ears. I also had a very different rash at the nape of my neck. Again this had been there for years before diagnosis. I showed it to 2 dermies, when I was diagnosed with SCLE and they basically said, I don't know what that is, but it isn't lupus. Well they were wrong. I finally got a good dermy last year, my Knight I called him, as in my Knight in Shining Armour, as in he helped me immensely. He was the first doctor I had met on my lupus journey who actually sounded like he knew what he was talking about re lupus and also truly wanted to help me improve me quality of life. He biopsied the rash at the nape of the neck and it came back showing lupus activity at various levels of the skin. He amended my diagnosis to SCLE with systemic features. Unfortunately he then left the health trust and I was back to square one. Which is why when I was refused a second opinion from various doctors that I ended up going to London to pay privately for a second opinion from a lupus expert. That got me the correct diagnosis of SLE, at last.

In fact when I googled rash at the nape of the neck, I found lots of info linking this to lupus and in fact it is very common for lupies to have a rash there. If I could find this out by googling, why didn't those first 2 dermies work it out? Laziness? Didn't know lupus well enough?

I have also had photo sensitive rashes on my feet and hands, causing open sores, bleeding and infections and swelling. I will probably remember other skin issues after this.

I guess what I am trying to say, in a very long winded way, is that I have suffered from various skin complaints over the years due to lupus. But it was only when I finally got a good dermatologist that I finally got some proper answers. The rashes and skin issues aren't always the same pattern or appearance but they have all been lupus related. I have concentrated on skin issues, because of your photo but I have other symptoms too.

In England you are entitled to select your consultant. And you are entitled to a second opinion. I do not have these rights in Wales. The Welsh NHS is completely separate now, run by our Welsh Assembly and tries to avoid spending money referring people over the border to see experts in England, even if it's in the patients best interests. So use this right wisely. Look at the Lupus UK site and see if there is a Lupus Centre of Excellence near you. Research your consultant. Make sure you are happy with the care and treatment you are receiving and be prepared to speak up if you aren't. 15 years is a very long time to have such sores and not get to the bottom of the cause.

So - arm yourself with as much information as possible. Join Lupus UK. Read as much as you can on here and on other reputable websites. The Lupus UK site has some great information and fact sheets. You might read things that make you think, well I've suffered from that for years but I didn't know it was linked to this. Keep a daily health diary of your symptoms, mood, energy levels, sleep patterns etc. Get your photos of your skin problems etc printed off and keep them for appointments. Sometimes these rashes and sores disappear before we see the experts, especially if you are waiting for some time for an appointment.

I have posted about my journey and skin issues, so take a look.

Let me know where you are re referrals to a dermatologist, bloods tests etc. Stay in touch.

I hope I have helped a little.

Best wishes.

Wendy

[Wendy39 in reply to Wendy39]

I meant to say, that lupus expert in London looked at my head sores and my photos and said that I am more photo sensitive than I realised and I need to cover up more. I have been told to wear a hat every time I go outside.

[elizabethanera]

Hi, found your post most helpful.i ,too, am in Wales and fighting to get diagnosed, how did you get to see a lupus consultant in London please?

[Wendy39 in reply to elizabethanera]

Hello elizabethanera. Lovely to hear from a fellow Welsh citizen. Are you new here?

The short answer to your question is that I ended up paying privately. I had asked 4 or 5 different occasions to different doctors - my GP, my rheumy and my dermy, to back me for an application for funding to see a lupus expert for a second opinion or be referred to the Lupus Centre of Excellence in Bath or be referred to my Knight in Shining Armour dermy that had left my health board to go back to Cardiff, but was turned down without even trying on I think 5 or 6 occasions.

I felt that I had the wrong diagnosis and I was banging my head against a brick wall. So, after a terrible flare, with the worst and longest headache I have ever had - 6 weeks - from Feb into April 2017 - my husband and I decided that we had no choice but to travel from Pembrokeshire and pay for that 2nd opinion. I saw Dr K at the London Bridge Lupus Centre and it was worth every penny. I was told I had SLE and had done all along and I was given a proper treatment plan. It's been my light at the end of a very long tunnel.

At diagnosis I had the malar rash, photo-sensitivity, extreme chronic fatigue, headaches of all kinds, out of control allergies, various skin problems, swollen glands in my neck, nape of neck and under my arm pit, hair loss and hair thining, lack of concentration and memory issues, depression, hip pain etc. I had a positive ANA, ENA and anti RO blood tests. My DS anti DNA was only about 3.8 I think. Bloods have never told the full picture for me. Since I have also experienced new symptoms.

The average lupus diagnosis does take 7 years. Even though we have similar issues, we are all unique in our combination of symptoms and lupus can mimic many other illnesses. So it is very difficult to pin point, unless your doctors are very knowledgeable about lupus.

The long answer is very long and if you've looked at my profile you will see my numerous posts on the subject. I will try to summarise it here.

With hindsight, my lupus was triggered by the birth of my 3rd child in January 2008. I flared most of 2013, my second big flare, again with hindsight. The first big one in 2009 went undiagnosed, even though I saw the GP a few times and there were some warning signs. 2013 was a terrible year for me. I lost 3 family members within the year, had a hip operation and then came the lupus diagnosis.

My husband thought I had lupus and I went to my then GP saying that I think I have lupus. I didn't know at that time that my GP had specialised in skin disease and she knew her stuff. She told me she thought we were right, it was lupus and not just discoid but systemic. She would phone when the bloods came in. She did and she said my bloods backed the systemic diagnosis but would need to see a rheumy to confirm and prescribe medication.

We had private medical insurance and so I naively booked an appointment with a rheumy in Swansea and didn't really check if he was a lupus specialist. I had never heard of lupus until my husband told me what he thought I had and I was clueless about the journey I faced. This rheumy said I had SCLE - an overlap with SLE and DLE. With SCLE you have a 50% chance of getting systemic lupus in the future. I was almost relieved initially as I thought, well it sounds like I have got off lightly really. I am lucky it's not SLE.

Anyway, the diagnosis never really sat 100% well with me. As time went on I thought I had SLE and I seemed to fit the criteria for an SLE diagnosis. Most importantly I had a malar rash and from my investigations people with SCLE didn't have the malar rash. But at this point, I thought, naively, these are the doctors, they know what they are talking about. My NHS Rhuemy appt then followed in March 2014 and she provisionally agreed with the diagnosis but ordered x-rays, ECG and lung function tests etc to use as a baseline for future reference and lots of bloods for screening. When I went back to see her in August 2014, she said yes, you have SCLE, no sign of systemic disease.

By this time my ANA was negative again, I think as I had been on hydroxychloroquine for 4 months.

Anyway, as time rolled on, I became increasingly convinced that I did have SLE. I still had that malar rash. I didn't only have skin issues. I had flares during the winter when one dermy told me that I would only get issues in the summer. My rheumy tried to reduce the hyroxy in the winter months and I flared. I had more and more flares, closer together and getting worse. The hydroxy wasn't controlling it, but my reluctant NHS rheumy never offered any further meds or a treatment plan for flares. She gave me no steroids. I had been prescribed hydroxy by the private rheumy in 2013 and in fact my HNS rheumy had never prescribed me anything and was not helping me in the slightest.

An MRI of my spine shows 2 areas of inflammation in my spinal cord and an MRI of my brain showed bilateral frontal white matter lesions. And even though I had worsening headaches, she never referred me to neurologist and never ordered any of the relevant bloods to check for hughes etc again.

My reluctant rheumy only seemed to reply on blood tests. She didn't listen to me and my symptoms.

I had a very good dermy for 9 months in 2016 and he actually knew lupus and wanted to help. After a biopsy at the nape of my neck confirmed I had active lupus at a lot of skin levels, he amended my diagnosis to SCLE with systemic features. I don't think this diagnosis actually exists officially but it was as far as he as a dermy could go, my diagnosis needed amending by a rheumy?

Anyway, he gave me 2 x 5 week courses of steroids over last summer. the first was to see if it had a positive effect on my symptoms. It did, hugely. I felt alive again. I felt human. And I had a great summer thanks to those steroids. Auto-immune conditions respond well to steroids. I think it's safe to say that I was symptom free on the steroids. So with this knowledge he started me on MMF. I am on the max dosage. So at that point I was taking 2 x 200mg hydroxy and 3g a day of MMF.

This is when I started asking for a second opinion again. My Knight had left and I still had no substantial treatment plan and lots of questions were still unanswered for me. I got refused. I took my case to my MP and attended a meeting with two senior officers from Hywel Dda Health Board, who seemed kind and caring and genuine at the meeting, but the outcome was, no change. You are being looked after. You have a dermy. You can change rheumy, from my reluctant rhuemy to a new rheumy. Her only colleague Consultant Rheumy and that will be your second opinion. Well that wasn't good enough for me.

Even when my private lupus specialist report came through, the health board never apologised. They were wrong. My diagnosis was wrong. My treatment plan was inadequate.

There is a lot more to it and it's all detailed in my profile.

So my journey has got very political. I have involved my MP and now my AM to try to raise awareness about the lack of specialist knowledge with our local rheumies. They are not lupus specialist, even if they think they are. If you look on the Lupus UK website, there are currently no Lupus UK approved Rheumatologists in Wales. Wales has no Lupus Centres of Excellence. The Welsh NHS is now a completely separate entity to the NHS England, it is run by the Welsh Assembly. Then on top of this, the Welsh NHS will not fund referrals to experts over the border in England, as it costs them more. So they argue you are being adequately cared for, when you are not receiving the latest, best care and treatment for your disease. I know someone else who asked the rheumy for a referral to a lupus expert In England and was told, you've got to be joking, you'd have to be dying for me to agree to that. I was horrified at the time but now realise that in fact that is the Health Boards policy - rather crudely put - but their policy as the same.

So now I am 3.5 years post diagnosis. I have the correct diagnosis at last and a treatment plan. But I am still fighting to get that plan fully implemented. So it's an ongoing battle. I have accepted that I will continue to see local NHS dermy and rheumy but I do not have much confidence in them and so I will continue to travel to London and that specialist will lead my care, as far as I am concerned anyway. That will give me hope and be more positive.

I hope some of this has helped. I am sorry if I have rambled. Perhaps, you could share with me a little of your problems in getting a diagnosis? If you would prefer not to share details openly here, feel free to PM me. They are others in Wales who are struggling and visit the London Bridge Lupus Centre and have messaged me.

Best wishes. I hope you will stay in touch.

Wendy

[elizabethanera in reply to Wendy39]

Hi, thank you so much. I had gone private in Jan after 3 years of getting nowhere. Saw a rheumatologist, who is supposedly overseeing results from gastroenterologist, immunologist, dermatologist,and now oral medicine at university hosp in cardiff.thinks I have a primary and minor immunity issues. GPS crap.have rung London bridge hosp today sounds excellent. Don't know what to do instead already paid for extensive bloods, still waiting and had some redone this past Tuesday!!!!!!also paid for scans of salivary glands, X rays showing oestoporossis. Help. Think my lupus could be drug induced by streptomycin as a baby.had health issues all my life, mainly chest,/ear.

[Wendy39 in reply to elizabethanera]

London Bridge is excellent for Lupus. People travel from all over the world to see the doctors there. Have you contacted Lupus UK re see where you're nearest centre of excellence is or where the nearest approved Rheumy is? From what I have read drug induced Lupus is rare and usually symptoms stop when the drug is stopped but Id have to check that out in my lupus books or on the Lupus uk website.

[elizabethanera in reply to Wendy39]

Streptomycin,teracycline,septrin could have triggered it years ago, and the birth pill, my rheumatologist says.thank younforvyour interest

[elizabethanera in reply to Wendy39]

Hi again, I am in Wales, no lupus centres here atall!

[Paul_Howard Partner LUPUS UK in reply to elizabethanera]

Hi elizabethanera ,

In North Wales there is Dr Yasmeen Ahmad who is a lupus specialist working between Llandudno and Bangor. They have also recently appointed a lupus specialist nurse after receiving a grant from LUPUS UK.

Unfortunately there is currently a lack of specialists in south and mid- Wales.

[elizabethanera in reply to Paul_Howard]

Hi Paul, many thanks. Seeing ent consultant Tues, will start pushing sle.think I have been fobbed off for years..I am only getting somewhere because I am not being "sad patient" who goes away anymore!!have been under ent for 50 years!!!!!! Getting angry now. Sorry x

[elizabethanera in reply to Wendy39]

Hi, yes I will stay in touch, off for an MRI for possible sjgoerns now.nwill get to you later x

[elizabethanera in reply to elizabethanera]

Did you read my profile?

[Wendy39 in reply to elizabethanera]

As is often the case with our weird auto immune diseases, your symptoms are very different to mine. I do get ear pain but mine is headaches with myalgia and I'm having ongoing investigations for CNS involvement with lupus. I am sure there are others here that can offer better advice. Post with the outcome of your MRI findings etc and I'm sure if people can help they will. Good luck with MRI. Best wishes.

[Wendy39 in reply to elizabethanera]

Let us know what the MRI shows.

[elizabethanera in reply to Wendy39]

Hi, sorry for late reply, had a bad couple of days. MRI was ok, now have to have lip biopsy. Had schirmers test.no tears!phoned London bridge hosp,most helpful .referral not necessary if I do decide to go,but I would ask my rheumatologist to do one.waiting for all test results first, private and NHs. Since being told by GPS, stress etc, I have been told osteoporosis, fibromyalgia, and severe diverticulitis!!notvspookybor my mind then.all diagnosed within very short period.not by GP.inwas curious bout Welsh policy, yes you are right.think I may complain too.as London bridge hosp is private, I am also looking at starting Thomas/guys enquiries.thank you for all your help. Seems that I do not have copd or asthma after all.gps totally wrong, again.kind regards

[Wendy39 in reply to elizabethanera]

Great. London Bridge are extremely helpful! Good luck with them. I had an hours first appt with Dr K for the price of a 1/2 hour appt, apparently he does that for all new patients. I took my photos, my letters from doctors so far, blood tests and biopsy reports oh and MRI reports. All were scanned into their records and I took my originals home again. I got my diagnosis confirmed in that hour. There are a few people here seeing experts at London Bridge. Post separately if you want an idea of who sees who. A complaint to your AM re our situation in Wales and lack of specialist services and refusal of referrals over the border to those experts due to cost implications are always a good idea. Unless we shout, we won't be heard. Keep us posted. x

[elizabethanera in reply to Wendy39]

Hi, that is very helpful indeed. Yes I would take everything too, still have to wait for all bloods, as some redone last Tues and may take c5 weeks.need these as paid a hell of a lot of money for them.yes I know London may want to do them too.much cheaper too!!!have tonsee oral medicine consultant next Friday. All took off suddenly, after years of flogging a dead horse. Rheumologist was disgusted at my GPS. Take care. Have a good day. X

[elizabethanera in reply to Wendy39]

Good to know that London bridge hosp isca totally committed autoimmune disorders and so dedicated

[elizabethanera in reply to Wendy39]

Thanks so much.x

[elizabethanera in reply to Wendy39]

Hi who do you contact re referral in Welsh assembly please?

[Wendy39 in reply to elizabethanera]

I'm not sure I understand. My GP referred me for my private appt in London. She agreed I needed a second opinion from a Lupus expert. Your GP will need to agree to write your referral letter to London Bridge. The Welsh Assembly don't deal with individual cases, just policy making. I contacted my AM simply to complain about the refusal to refer me for a second opinion on the NHS and to complain about the lack of specialist services in Wales. Do you think your GP will refer you?

[Paul_Howard Partner LUPUS UK]

Hi Clairesager ,

I'm afraid that as we are not medically trained we couldn't say whether this could be discoid lupus or something else. Have you had any tests done (blood tests, biopsy etc.)?

If you'd like more information about skin involvement in lupus, we have a booklet that you can read and download on our website at lupusuk.org.uk/wp-content/u...

[Biloxi]

Hi. I have discord lupus, but mine is a little different. I have a couple spots like that on my face. I get smaller scabs on my scalp at my hairline, and I start losing hair in that place. I started wearing a hat everyday, every time I go outside. Since then, my hair started growing back, and the scabs stay away. If you haven't already, become an avid hat wearer. It's like being in the shade everywhere you go, and there are a lot of compliments too! So it's a win win.

[Wendy39 in reply to Biloxi]

You're right. I've been told to wear a hat every time I go out and I think it's helping. Along with thick clothing and special UV tops and sun cream and sun glasses etc etc! I don't look like it's summer! 👒👒

[Muskin]

yes there is a cream the doc have for the hair it will bring hair out some doc call it a mole when outside cover up put hat on you should have been to the doc when u first saw a small ball spot you have to take good care of yourself your hair will fall out get cream right away.

[Wendy39 in reply to Muskin]

Hello. I get problems with scalp sores and rashes. Hair loss and thining. Etc. I've never been told about any preventive cream fir the scalp? I'm just prescribed sun sense factor 50+ sun cream for my skin. Would you mind telling me the name of the cream you get? Thank you.

[Muskin]

yes it is doc have a cream put on scalp twice a day when in sun put hat on cover up

[Muskin in reply to Muskin]

Hi Wendy ernestine here is the name of cream mometasone furoate cream asp,0.1% put a little on each legion it grows your hair back and legion disappear (yep your hair clean wear hats remember put little bit on scalp. Kerigan shampoo also grow your hair to.keep me posted good luck

[Muskin]

Wendy 39