Scalp and hair problems possibly from discoid lupus

Posted by pollyanne @pollyanne, Sep 6, 2019

I just posted on the women’s health but this might be a good place for my health problem also. I was diagnosed a few years ago with Discoid Lupus although the Drs are not really sure. I have been using liquid Clobetesol on my scalp for the itching and soreness with inflammation. It is basically one area of my scalp on the top of my scalp and slightly to the left although the remainder of my scalp is also somewhat itchy. Recently a new dermatologist suggested that I try 5mg injections of the same steroid into my scalp in the irritated area. They did not help and so she increased the dose to 10mgs. Immediately I worsened and in the center I had a slight bump and then my hair fell out. It is not a huge area and I can cover it with the rest of my hair but I am remaining very sore, inflamed and itchy. I feel that my hair is becoming thinner all around this area and tonight I cannot sleep because of the itching which seems to be spreading. I am also taking Plaquinel by mouth and they tell me that it doesn’t work for 3-4 months. I have been on it for about 3 weeks. Does anyone else have a similar problem and have you had any good results? Has anything helped? I am scared of losing all my hair. Thanks. Jennifer

@pollyann Welcome to Connect. We’re not doctors on this site but we all try to share information and support. What you have mentioned in your treatment of discoid lupus is what is suggested by the lupus foundation. Plus covering up from the sun is so important! I have a different type of autoimmune disease and also need to stay out of the sun because of my medications. Have you seen a rheumatologist? They seem to be the ones with the most knowledge of autoimmune diseases. Did you have a biopsy to confirm the diagnosis? Please stay in touch, someone on the site may have direct experience.
https://www.ncbi.nlm.nih.gov/books/NBK493145/ Check out this website

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@becsbuddy

@pollyann Welcome to Connect. We’re not doctors on this site but we all try to share information and support. What you have mentioned in your treatment of discoid lupus is what is suggested by the lupus foundation. Plus covering up from the sun is so important! I have a different type of autoimmune disease and also need to stay out of the sun because of my medications. Have you seen a rheumatologist? They seem to be the ones with the most knowledge of autoimmune diseases. Did you have a biopsy to confirm the diagnosis? Please stay in touch, someone on the site may have direct experience.
https://www.ncbi.nlm.nih.gov/books/NBK493145/ Check out this website

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I live in Hawaii so of course there is plenty of strong sun but I always wear a hat. I have also had a couple of inconclusive biopsies. I wonder whether I should have another one while it is so bad. Also, I haven't seen a rheumatologist for a few years and never about this problem. I have seen him in the past for Sjogrens syndrome and fibromyalgia. Thanks for your ideas.

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Hi. I'm sorry to hear you can not find relief. I myself suffer from an occasional psoriasis out break. Mostly along the back of my hair line. I have a ointment I use to keep it under control. My biggest scalp problem is pain. My hair hurts. Crazy as it sounds. My Dr tells me it is from inflammation. When it does occur, I can not stand to touch my head, or move my hair. It is the strangest thing.

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@brie

Hi. I'm sorry to hear you can not find relief. I myself suffer from an occasional psoriasis out break. Mostly along the back of my hair line. I have a ointment I use to keep it under control. My biggest scalp problem is pain. My hair hurts. Crazy as it sounds. My Dr tells me it is from inflammation. When it does occur, I can not stand to touch my head, or move my hair. It is the strangest thing.

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Well, I'm sorry to hear about your scalp problems. What strange things we get wrong with us and the medical profession so often doesn't understand. My Dr obviously didn't understand my problem and so gave me shots in my scalp of something I must be allergic to. My hair fell out in the area she gave several injections and I now have a problem that is way worse than it was to begin with. It is depressing to lose hair and my bald patch is a good size. I try to cover it with the rest of my hair but it isn't easy. I don't really know what to do next. I think I may see a rheumatologist about my immune system.
If you have inflammation why can't they give inflammatory medication. Having said that, mine must be inflammation too. My manicurist lost hair recently and had itchiness and bald patches. They said it was stress and gave her pills but I don't know what they were. She seems ok now and her hair grew back.

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Have you ever had patch testing done for contact allergies? I have Lupus. I also have environmental allergies. I had skin on my scalp/back of my neck get bad enough that I had a biopsy for psoriasis. I didn't have psoriasis, I ended up having contact allergies to fragrance. Steroids won't provide much relief for contact allergies and can be another contact allergy themselves. It can be very hard to avoid products with fragrance (and other top contact allergies.) Avoidance of triggers is usually the only way for skin to clear up. You have to avoid all products with – hair, skin, household – as well.

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I think you should see another doctor for the maybe lupus.i have intense itching on my scalp sometimes. I use shampoo and conditioner with tea tree oil, over the counter. I also have some liquid to put on after washing. Brand name OGX. Green bottle Really helps. If I skip a couple days of cond. then its intense itching. My dr says no to lupus on the scalp. All my antibody tests were normal for years. I finally found a test online called anti'-smith also called anti-sm. I tested positive for lupus 3 times, only in upus
. But wasnt active. Although last few years negative drs have said numbers go up & down.if it was me I wouldn't take these strong drugs for a maybe diagnosis , who know what else it is doing inside

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@pollyanne

Well, I'm sorry to hear about your scalp problems. What strange things we get wrong with us and the medical profession so often doesn't understand. My Dr obviously didn't understand my problem and so gave me shots in my scalp of something I must be allergic to. My hair fell out in the area she gave several injections and I now have a problem that is way worse than it was to begin with. It is depressing to lose hair and my bald patch is a good size. I try to cover it with the rest of my hair but it isn't easy. I don't really know what to do next. I think I may see a rheumatologist about my immune system.
If you have inflammation why can't they give inflammatory medication. Having said that, mine must be inflammation too. My manicurist lost hair recently and had itchiness and bald patches. They said it was stress and gave her pills but I don't know what they were. She seems ok now and her hair grew back.

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@pollyanne I’ve been thinking about you and wondering how you’re doing. The fragrances the manufacturers insist on putting in everything can drive us crazy! Have you tried changing to plain soaps, etc? You also said that you were going to try to see a rheumatologist—have you been able to find one? Please let us know!

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I have been meaning to write something more and thank you for asking. Here is an update. I have managed to make an appointment with a rheumatologist on Oct 16, so there is a bit of a wait but that's OK. Meantime I am taking the Plaquenel because it takes 3 or 4 months to work. My original dermatologist has suggested that I try another medication also. [It's a long name and I will check it and let you know next time] She believes that I have Discoid Lupus plus a neurological problem where my nerves are not firing properly. I also have a slight itchiness all over me especially my arms.
I am also going to ask my Kaiser dermatologist for some allergy patch testing so that we can see what might be going on there plus I am seeing my new family Dr on Monday and will ask him for a thyroid test just to make sure there is nothing there. It all seems nothing but Drs right now. I do also use the Ketoconazole shampoo every couple of days as I feel that it soothes. It is anti fungal which also makes me wonder about yeast in my body. When I was younger I used to have a lot of yeast infections.
I also have Sjogrens Syndrome and irritable bowel and some suggestions of fibromyalgia. [Quite a mess really aren't I, although basically I feel healthy]
My original dermatologist spoke to me yesterday on the phone and we went over everything. She told me not to give up. Apparently there are also scalp specialists and it might be good for me to see one. However I have Kaiser insurance and I don't think they have one. It might be possible to have Kaiser agree to me seeing a scalp specialist at Mayo clinic, in which case I would go to Phoenix. We have family in Tucson. So there are a few things in the works. I am also using hydrocortisone lotion on my scalp instead of the clobetesol which was what the kaiser dermatologist injected me with. It obviously doesn't agree with me. I just hope it hasn't killed of the hair follicles.
I will stay in touch with what else happens. Thank you for showing an interest in me. It is a good feeling to have some support.
Jennifer

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@pollyanne

I have been meaning to write something more and thank you for asking. Here is an update. I have managed to make an appointment with a rheumatologist on Oct 16, so there is a bit of a wait but that's OK. Meantime I am taking the Plaquenel because it takes 3 or 4 months to work. My original dermatologist has suggested that I try another medication also. [It's a long name and I will check it and let you know next time] She believes that I have Discoid Lupus plus a neurological problem where my nerves are not firing properly. I also have a slight itchiness all over me especially my arms.
I am also going to ask my Kaiser dermatologist for some allergy patch testing so that we can see what might be going on there plus I am seeing my new family Dr on Monday and will ask him for a thyroid test just to make sure there is nothing there. It all seems nothing but Drs right now. I do also use the Ketoconazole shampoo every couple of days as I feel that it soothes. It is anti fungal which also makes me wonder about yeast in my body. When I was younger I used to have a lot of yeast infections.
I also have Sjogrens Syndrome and irritable bowel and some suggestions of fibromyalgia. [Quite a mess really aren't I, although basically I feel healthy]
My original dermatologist spoke to me yesterday on the phone and we went over everything. She told me not to give up. Apparently there are also scalp specialists and it might be good for me to see one. However I have Kaiser insurance and I don't think they have one. It might be possible to have Kaiser agree to me seeing a scalp specialist at Mayo clinic, in which case I would go to Phoenix. We have family in Tucson. So there are a few things in the works. I am also using hydrocortisone lotion on my scalp instead of the clobetesol which was what the kaiser dermatologist injected me with. It obviously doesn't agree with me. I just hope it hasn't killed of the hair follicles.
I will stay in touch with what else happens. Thank you for showing an interest in me. It is a good feeling to have some support.
Jennifer

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@pollyann I’m so glad you’re moving forward. Your list of doctors is getting so long—just like mine did! My husband started a spiral notebook with sections for each doctor just so we could keep track. Exhausting! The same notebook went to every appointment so we could refer back to other appointments and doctors. It has worked so well! And, include your new doctor in on everything!
I sure hope Kaiser can agree to a scalp specialist so you don’t have to make such a major trip! But, it’s probably worth it, just to get answers. Do you feel like your getting somewhere?

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I don't really feel like that yet. I am looking forward to chatting with the reumatologist to get his/her input and maybe some updated blood tests. I am also looking forward to meeting my new GP as my original Dr retired and the one that took his place only stayed for about 18 months. The nurses are all enthusiastic about this new man so I am optimistic. I hope the appointment is long enough for all my problems. I shall keep a list before I go in there on Monday. Thanks for the ideas about the notebook.

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jcather mentioned patch testing for Allergic Contact Dermatitis, ACD for your itchy scalp. Our scalp is very sensitive to our grooming products. Google the 5 4 or 5 Day Extended Patch test. ACD is a form of eczema an auto-immune disease. Like me those of us with auto-immune diseases often have several auto-immune diseases. It is possible your hair products are causing this reaction. Hair products are loaded with chemical and yes even natural ingredients (like tea tree oil, aloe vera,tea tree oil, essential oils which can cause reactions). Natural doesn't mean safe. Preservative additives are an allergy for many, like MI/MCI. Many manufacturers took out formaldehyde and put in MI/MCI a decade ago and now many of us are getting the MI/MCI allergy, like me. Why does a bottle of shampoo need to last 100 years? Before testing quit using any of your hair products. Wash your hair with Grandma's bar soap, only 2 ingredients- lard and lye and the lye is converted into glycerin, both are moisturizing. Grandma's is no a Mayo SkinSafe product. Yet without soft water it may be hard to get a lather. For a safe de-tangler, rub a few drops of glycerin on your hands and pat your wet hair before combing out. The safest good shampoo I have found is Clark Wash for hair and body by VMV. Yet is has more than 2 ingredients, but none cause a reaction for me. Start by looking up and studying all the ingredients in your shampoo. Even Free and Clear, touted to be an safe shampoo for ACD suffers makes my scalp itch. Once tested you will be registered on the CAMP list which filters your allergens with grooming and cleaning products and keeps updated yearly with new products. It will offer over 20 pages of products free of your allergens.I used to pull on my hair while watching TV in the evening and my husband would warn me I would go bald, yet it would relieve the itching for a few seconds. I had neurological testing, brain scans, believing the insane tingling and itching in my scalp was based on nerve damage from another health issue I had. Not the case, it was ACD.

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@gardeningjunkie

jcather mentioned patch testing for Allergic Contact Dermatitis, ACD for your itchy scalp. Our scalp is very sensitive to our grooming products. Google the 5 4 or 5 Day Extended Patch test. ACD is a form of eczema an auto-immune disease. Like me those of us with auto-immune diseases often have several auto-immune diseases. It is possible your hair products are causing this reaction. Hair products are loaded with chemical and yes even natural ingredients (like tea tree oil, aloe vera,tea tree oil, essential oils which can cause reactions). Natural doesn't mean safe. Preservative additives are an allergy for many, like MI/MCI. Many manufacturers took out formaldehyde and put in MI/MCI a decade ago and now many of us are getting the MI/MCI allergy, like me. Why does a bottle of shampoo need to last 100 years? Before testing quit using any of your hair products. Wash your hair with Grandma's bar soap, only 2 ingredients- lard and lye and the lye is converted into glycerin, both are moisturizing. Grandma's is no a Mayo SkinSafe product. Yet without soft water it may be hard to get a lather. For a safe de-tangler, rub a few drops of glycerin on your hands and pat your wet hair before combing out. The safest good shampoo I have found is Clark Wash for hair and body by VMV. Yet is has more than 2 ingredients, but none cause a reaction for me. Start by looking up and studying all the ingredients in your shampoo. Even Free and Clear, touted to be an safe shampoo for ACD suffers makes my scalp itch. Once tested you will be registered on the CAMP list which filters your allergens with grooming and cleaning products and keeps updated yearly with new products. It will offer over 20 pages of products free of your allergens.I used to pull on my hair while watching TV in the evening and my husband would warn me I would go bald, yet it would relieve the itching for a few seconds. I had neurological testing, brain scans, believing the insane tingling and itching in my scalp was based on nerve damage from another health issue I had. Not the case, it was ACD.

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Thank you for your suggestions. I will look into the 5 day extended patch test. I believe that would be with the dermatologist. I have my health coverage with Kaiser and I cannot get an appointment until sometime in November. For sometime I have been using the Ketoconazole prescription shampoo which my original dermatologist put me on and I do feel that it helps. She still definitely wants me to use that. I believe it is anti fungal. I also use a leave in spray conditioner with sun screen and I do try to keep it off my scalp. I also have my hair coloured to cover the grey, but again I have it done in a way that keeps it off my scalp, using silver paper. I will see where we go from here but I can't have allergy testing done until the middle of November. Do you have the name of a conditioner that is allergy free? Do you just use the glycerin?
Thank you again for the suggestions.

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