What to expect-discoid lupus-

Hi,

My daughter has recently been diagnosed as having discoid lupus and has symptoms on her scalp.

I have had an initial consultation with a local doctor and am now in the system to see a doctor at st thomas (nick wilkinson), I posted on here a month ago and got some excellent advice, actually the only advice i have had so far! fingers crossed we will get to see somebody soon.

Anyway, we were given steroid pills for her which helped reduce the red swollen lumps on her head... I think, we are not taking the steroid pills anymore but my daughter is now developing new sore swollen head lumps, does anyone know if this is whats called a flare and also should we just wait this out or do we need to re nag someone and get her back on steroids (as this seemed to keep it at bay)

Other question is this normal with discoid, dose it come and go, or does it arrive (as in the form of swollen sore bald lumps, and then stay?) lots of questions and nobody to answer... yet.

any help would be great.

thanks so much so far.

14 Replies

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  • Oh my can I relate! I believe I can help you. Most of the population here have SALE, I ONLY have Discoid (and a few other diagnosis), however, yes! yes yes yes. Those numbers WILL turn into bald(ING) spots.

    I was poorly dealt with, I was diagnosed (at36) with DLE and it was confirmed through a biopsy. I recommend she has this done. It will be able to differentiate between terminal and not terminal hair loss. Mine is terminal, which means, once it's gone, it's gone.

    Here is my story (a bit lengthy only because I don't want to see your daughter experience the same thing).

    It took only 6 months for my diagnosis. I was quick, as my GP is also my mother's GP and she has SLE, so he took my initial concern for what I thought might have been psoriasis seriously and tested a few creams, ointments then the biopsy. In February 2013 I had 2 spots the size of your thumbnails on my crown.

    Today, I have about 5 spots (the major ones) that are about the size small orange. Those are only the major ones. I have numerous (another 6 or more) smaller balding spots throughout the rest of my head.

    And they all started from tiny red bumps that I thought at the time (November 2012) were simply pimples or sweat bumbs on my scalp.

    They are now large, red, scaly, painful to the touch and elements (wind, sun, water). They have also decided to creep down the side of my face, both in front of my ears and behind them and most recently, one thought it would vacate onto my arm by my elbow.

    Darn lesions, I feel like I have leprosy at times. It will definitely affect her self esteem should it grow like mine did.

    I had very little help until recently. They itch and burn like the dickens.

    What I have just described is a flare. I was in constant flare up until my new dermatologist put me on Plaquinel.

    My old dermatologist, after 6 months of seeing him, finally decided to give Prednisone to me. It helped alleviate a lot of my symptoms (not just the head, I have a few other issues too). But it just didn't cut it. That was when he referred me to the dermatologist in the lupus immunology clinic.

    There at my first appointment (second one coming up in 30 days) He prescribed the Plaquinel and I started to receive injection therapy. The 2 together have done wonders. I wasn't able to complete the injections as I passed out. I am glad I did! I can now feel, first hand the difference it has made on my spots. The one area he injected, barely itches and burns, the other one he stopped doing because of my fainting are extremely tender to the touch, and the ones he didn't do are mediocre in symptomatic description. They still itch, burn ,etc, but nowhere remotely as much as they did prior to this new medication.

    Photosensitivity. Odds are pretty good she has it or will develop it. Pretty much, it's being allergic to the sun. The sun will help flare up her lupus, guaranteed. Make sure she covers up her skin and wears sun BLOCK, not sunscreen and a hat, hat hat, always.

    Other oddities that I have from my Discoid is purpura (super tiny purple dots that randomly appear on my body) and liveto reticularis.

    Not sure how her blood work looks, but I know I have a constant low white blood cell count (which makes us prone to infections and the like).

    I hate the fact that I have it (heck who does really?) however, it is a part of my life. I am fortunate that I have/had a lot of very fine yet wavy/curly hair; which makes it a wee bit easier to pin up and conceal the spots mostly.

    It sounds like she is in good hands. The doctor has already put her on medication (probably Prednisone or antimalarial) to test and see if it helps her. Hearing that she is getting more bumps tells me, it is growing. Please, please, please, have her try the meds again. They do help ease the symptoms.

    One other thing I failed to mention. Stress. That is the number one thing that will provoke her flares and ultimately either make the spots grow larger or new ones arise.

    Everyone is different with lupus, virtually no 2 people alike. It's unique, just as unique as we are as humans. She very well may not experience what I have, rather she may be lucky and have it kept just where it is. There are a small percentage of those with Discoid that develops into systemic lupus. Every where I've read and each doctor seems to have a different percentage, bit the largest I've heard is 20% and the smallest is 3%. Nothing I would worry about right now. If her blood work doesn't show signs of SLE, don't sweat over it. Just make sure she is aware that if weird things start happening to her body, she must get tot checked out.

    It is a well known fact, auto-immune diseases don't like to be alone, later on another one or two may pop up. I just hope she is an exception and if not, she is like me, where they are minor and livable.

    Life doesn't end because of this. Try to make sure she understands this.

    I chuckle right now, I just realized I have only scratched my head about 6 or 7 times while typing this! That is good, prior to my meds I would have to pause after every few words to itch. The running joke in my house:

    Those darn fleas are at it again! Damn them! lol.

    If you have any other questions, please do not be afraid to ask them here. This here is an awesome community, full of support, answers, comradery and guidance.

    Lara

  • Haha I've just read your reply scratching my head!

    I'm newly diagnosed SLE but have red sore lumps on my scalp. They're not big they're like spots and not many could these be lesions? Is there anything I could put on them to help? Will they get worse and could I lose more hair? My hair has thinned especially at the back of my scalp but no patches of boldness x

  • MissFG,

    I'm my previous reply, I said that every lupus is unique like people are and this is so true!

    My Mom has SLE and I remember, for years as a young adolescent and adult her always taking the comb and scratching her head hard, harder and then some more until it bled. She was constantly itchy and often had is kids "inspect" her head to make sure she didn't have lice. No, she didn't bit she always had those little red itchy bumps. We had penned it down to 'sweat bumps'.

    She was diagnosed at 63. When I was diagnosed with DLE and really began my research on this thing called lupus, is when I discovered that those bumps and her thinning hair was just another affect of this disease.

    Now, here this. True story.

    When I called her, back in 2013, to let her know that I was diagnosed, she hung up on me. Later and continually, she denies that I have it because 'I have lost my hair' and that is not lupus, because she didn't lose any, just thinned out.

    Huh??? And I still think this, why would she say such a thing?

    Anyway, that's besides the point, I mentioned it because, not always do these bumps lead to balding. From what I understand, thinning of the hair is generally the norm for those with SLE. With Discoid, for me anyway, these bumps turn into lesions causing total hair loss and yucky and angry looking bald spots. I think that is just Discoid lupus.

    It seems from what I've read that 10-20% of DLE gets diagnosed with SLE. Also, 10-20% of those diagnosed with SLE, will have DLE.

    I hope, no one here experiences what I have and all that I have been through. Discoid is a total and complete self esteem killer. It has taken me at least a couple of years to finally accept the fact...I have a very head, one that grosses people out when they see my spots. It is now just a reality, a part of my life. It could be worse, I could have internal complications like some SLE but I count my blessings that I don't and I will take my missing hair and ugly spots with a smile.

    Lupus can be easier to accept when you alter your outlook, attitude and ultimately the two combined alter your lifestyle, making symptoms a bit to a lot more comfortable, within yourself.

    Hugs

    xoxox

    Lara

  • Thanks Lara I've thought I'm lucky I don't have really any skin issues or rashes! However still waiting fir results on my lung function and have my echocardiogram in 2 weeks so fingers crossed.

    I know attitude helps and I definitely want to help myself by improving my diet, supplementing, meditating and even starting going to some exercise classes next week even if it kills me. However getting my head around having 2 chronic autoimmune diseases is not so easy and going to take longer. But I wondered what the lumps / spots were and so far thy just come and go so hope that stays they same and just keep positive and I think law of attraction and positivity can be key to getting through this x

  • I say to myself about every other...this is the day I'm going to the gym! But that hasn't happened yet since January lol. The dog and fatigue are brutal.

    One other thing I want to note about the bumps, for me (and also reflecting on my mom years ago), when there is stress, the head itches, bumps arrive on the scene. For us anyway.

    Good luck with your tests Hun. Thinking positive waves for you :)

  • I've been saying the same even got the courage to go have a look round and filled out the forms! However I have today booked on a Jump trampoline class with a friend next Tuesday evening so let's hope I don't need the Tena ladies 😂

    Stress is a key factor for me it's been a very tough year. Do they cause pain and headaches?

  • Ha ha. Love your sense of humour!

    From my experience they don't cause headaches...lupus in itself does!

    My spots and bumps are very tender and sore. At times I can scratch them with no pain then other times I winch in pain just from touching them. I could be feeling this too from my fibromyalgia. Your pain sensory is sensitive and heightened with fibromyalgia, so I'm not 100% what is what. But oftentimes touching them dead on, just with my finger aggravates it and hurts.

  • I use tea tree oil in my shampoo and it seems to help some. Otherwise, it's super annoying!!

  • My daughters checked and they're mainly around my hairline at my neck but I'll try that I used to get tea trea shampoo for nits lol when my daughter was young

  • I use the essential oil and add a couple drops to my shampoo. You can also use lavender oil.

  • Hi MissFG. Mine started out as little red spots and now have turned into scarred bald lesions the size of a quarter and 2 even larger ones. I waited 2 years before getting treatment so please stay on top of those and get a biopsy done right away if possible. I have discoid lupus. Good luck

  • My consultant last week just dismissed it and didn't even look at them. Think he decided as they come and go not to concern myself :/

  • Dear Lara,

    Thank you so much for sharing your story with me, it sounds like my daughters head lump symptoms sound very similar to yours, she was put on prednisone and this kept the redness and swelling down, new lumps started appearing but the established sore ones seemed to recover slightly, now she's finished her course of prednisone, the new areas are a lot hotter/redder and swollen, I'm thinking of taking her back to the gp to see if they can prescribe another course of prednisone to tie her over until we can finally see somebody who can explain all the things we need to know, drug choice etc, she also has a steroid liquid to put directly onto her scalp, I'm just worried about too much steroids for a child. hummm.

    I just wanted to say a big thank you for all the info you have shared with us, its a great help... hope you get those irritating fleas under control too!

    Best wishes,

    Tommy.

  • Tommy,

    I am happy I was able to help. I was put on 2 cycles of prednisone, which did help relieve the itch, pain, redness and flakiness of my spots, and it had a beautiful residual but moderately fading effect. 4 months later and I was given Plaquinel and it has helped me, slowly, but has helped me with my symptoms.

    I too was on the liquid steroid and never used it. Two reasons, one it didn't ease any of the symptoms and secondly, it made my surrounding hair greasy and took up to 5 shampoo sessions to wash it out; whilst the greasiness on the hair would irritate my spots and made them ultra sensitive. A touch, the way a strand of hair laid or the pressure of the shower hurt like the dickens, feeling like I just bumped those spots on a corner shelf (like feeling).

    I do not know how old your daughter is, but I would recommend asking your GP to prescribe an antimalarial instead of more prednisone. Get those symptoms received ASAP because the stress of them can and will cause more.

    I'm in Canada, not quite sure if the GP there can prescribe the antimalarial or not, if they can't, have them extradite the referral for the dermatologist and also request to be put on the cancellation list.

    Best of luck!

    Lara

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