Hair loss..?

Ok so I have these weird bumps//sores on my scalp... They are too big to be lice bites.? And also my hair has been falling out quite a bit? Even though my hair is bleached it's never been falling out like this... Does this have anything to do with me possibly having lupus?

17 Replies

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  • Hi wiki pie I also have these very itchy and annoying I use special shampoo from the doctors and take strong antihistamines three times a day ..There is a name for it which I carnt pronounce but in general it is one of the many side effects of lupus .my dermatology doctor was more useful I find the gp has very little knowledge about lupus and the ever growing side effects .hope this is useful ..x

  • When my lupus is out of remission my hair loss is quite substantial. So I think the answer is yes but do get it checked a friend of mine has psoriasis and she also has sores. Regards Diane

  • Hi Wiki pie, I also have what you have described and the dermatologist linked it to lupus. I have been prescribed with a steroid shampoo and steroid creams / topical solutions but not sure if it's helped. What it's supposed to do is stop further scarring and hair loss. Interestingly I was over in the states late last year and according to them hair loss is no longer considered to be a symptom of lupus! Confused or what! Best for you to check it out with your dermy for their opinion and treatment. Sorry if this doesn't help and good luck.

  • Shocking! If Lupus isn't the cause for the hair loss, what is? Then they have the nerve to say we the patients have it all in our heads! Humbug

  • Hi wiki pie

    I also have the sores/bumps on my scalp I went to a dermatologist 2 months ago and was given scripts for a shampoo and calming oil to put on my scalp.

    It doesn't seem to be working so I will be talking with my dermy soon. My dermatologist said it was lupus related she had seen it before in lupus patients along with hair loss.

    Good luck :)

  • If you are on hydroxychloroquine, then this can make psoriasis worse. I never really had a problem with this before but now have a couple of patches of horrid red, scaly psoriasis on my scalp since starting the drug. I haven't had hair falling out though - sounds horrible :(

  • The problem is my doctor is afraid it's lupus, we don't have any facts yet... Although all the signs are pointing to it... I'm just trying to piece together all my symptoms, and get my self ready for future diagnosis, I have a rheumatologist appointment Feb 1st so wish me luck

  • Good luck with your rheumatologist appointment. Please let us know how it goes.

    We have a factsheet called, 'LUPUS: The Skin and Hair' which you may find helpful to read about hair loss. You can download a copy at lupusuk.org.uk/publications/

    Also, if you need more information about lupus and how it is diagnosed we have a free pack that you can request or download at lupusuk.org.uk/contact-us/

  • It is widely accepted that any autoimmune Diseases are associated with hair loss / be it diffuse shedding or partial balding, or at times male pattern balding, eyebrow losses, body hair loss, the entire scalp hair loss. What you describe, hair loss with scarring tissues is a hallmark of SLE..if rheumy says, not sure, then time to switch to someone who has understanding of some basics of SLE such as hair loss. drugs can cause hairloss as well but with scarring, it's the immune attack. Having said that if you are not eating well, deficient in basic nutrients to keep the hair production going, then your hair could get affected. but that won't cause scarring. I don't get scarring but my hair can shed badly if I am not eating well. People who have autoimmune disease haven't got robust connective tissues (inc. hair follicles).

  • Hi, my diagnosis is undifferentiated autoimmune disease, Sjogrens, uveitis, COPD and rheumatoid arthritis. I also have flare ups of facial rash which for a number of years was the typical butterfly rash but since I was put on Hydroxy a few years ago it has become less defined, just blotchy really, and it is there most of the time rather than just when I'm having a flare. A fairly recent development is inflamed lumps on my scalp. My hair has got thinner and tends to fall out (luckily not in clumps, just generally when I comb or brush my hair). I had them last time my hairdresser came to cut my hair and she said my scalp was "very pink and hot". The lumps can be quite painful but they seem to heal up of their own accord. I have an absolutely useless rheumatologist who isn't interested in anything other than joints but my GP thinks the thinning hair may be connected to the medication. I haven't found a solution to the bumps, but I try to use mild, organic shampoo and wash it less frequently (I've always washed it 4-5 times a week before!!). I hope you find something that helps.

  • Sounds like you need a much stronger drug? With uveitis, I'm assuming you are on a beefier drug, Granntpyjogger? Your G P is wrong. You shouldn't be losing so much hair if your lupus is controlled and you are eating well.

  • I have steroid drops for the uveitis and it has been fairly well controlled for quite a few years. The flares are infrequent now but unfortunately I developed a cataract, possibly because of the previous frequency of flares or the long term use of steroids (or maybe both). Luckily I have an excellent optometrist who is monitoring things.

    Fortunately the hair loss is not excessive. I have had gastro problems (as a result of hiatus hernia and excessive reflex) for over 30 years so I keep an eye on my diet. My autoimmune disease is pretty well controlled now but it took many, many years to get it recognised, so lots of damage had already been done such as poor lung function. All in all I think I'm pretty lucky. I can still work full time and flares are far less frequent than the used to be.

  • grannyjogger, thank you for sharing. Yes, diet is so incredibly important in SLE or in any autoimmune diseases. Wishing you well. Best regards, C.

  • Hi Wiki_pie,

    I was so sick after years of being told I had migraines, chondritis, to i may need to talk to a psychiatrist as I really didnt have anything wrong with me and then when my seizures started that I was lazy and wasting the doctors and consultants time that when my local gp suggested a rheumatologist I was so down I wrote all my symptoms down. Yep everyone of them including miscarriages, headaches, ditzy head the lot. The rheumy took a look at the list and within 30 seconds hoped he was wrong but said that he knew what my diagnosis would be.

    Had the tests and yep three months later was diagnosed with Systemic lupus and APS as well as reynaulds disease.

    Now my doctors are falling all over themselves and it is getting very tiring hearing them say how sad they were at my diagnosis and that they really hadnt expected it. Im 62 now and it has taken them 40 years to diagnose me.

    I think the upturn of it all is that as I have had it for so long (since I was 18 apparently) I can cope with it very well as ive always felt like cr** I really just get on with it.

    What all this is about is sit down and write it all down. Take someone with you to the rheumatologist who can back you up and just give him a list of all the symptoms. He/she will know exactly what they are dealing with then and can help you much more.

    Very best of luck and ill be thinking of you.

    Regards Diane

  • Hi Diane

    I too am 62 and my symptoms started after I had my first child 31 years ago (followed by 3 miscarriages in the next 4 years before I had my second child). I know just what you mean about just getting on with it. A few years ago when I first joined this forum I realised from other people's posts that I had many more symptoms than I thought - many of them were just 'me' and I hadn't linked them. I'm much more aware now and cope pretty well most of the time. Still trying to find ways to cope with the fatigue and the brain fog!!!

  • Yes i started getting these as well they itch a little then scab over then peel leaving a depression I am currently on dapsone and colcrys from what the biopsy said it is a neutrophil dermatosis also known as sweets syndrome I found they go thru stages of severity and then seem to clear but come back it is very cyclic same issue on my face, neck and ears and throat area heat and sun seem to make it worse I am also taking plaquenil and prednisone and progesterone seems to minimize since my dx 4 years ago not as bad for hair loss same issue where these break outs occur is where I have less hair as well

  • Hello, I am replying late but I have lupus and connective tissue disease. I developed the bumps in my hair during the hotter months. My mother is a cosmetologist and knew right off it was psoriasis, she also says psoriasis has a distinct odor. I use a shampoo called Nizoral (very good). Most dermatologist recommend this shampoo and it can be found at Walmart, and drug stores for a little over 7 dollars. Also, it helps to keep the dry areas moisturized the itch wont be as bad. The more you scratch the better the chance of losing hair and hair breakage. Hair Loss was one of the first symptoms I had when diagnosed, now it is not a symptom? That is new.

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