Scalp and hair problems possibly from discoid lupus

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.

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.

You can try Free & Clear conditioner. However, if you're treating a contact allergy you have to eliminate all products that have it not just hair products. I have fragrance contact allergies and I react on my scalp and neck. But contact can be almost anywhere on your body and you will still react on your scalp if that's where you react. If you want to avoid fragrance (it's in almost everything and in all but 1 or 2 medicated shampoos) you'll need to avoid it in hair care, body care, makeup, household cleaners, laundry, etc. Anyone can use the SkinSafe website and app and you can choose to eliminate products with fragrance or all of the top 10 contact allergens.
I use Free & Clear conditioner only because my hair was very dry. There's a good chance that you do not need to shampoo at all or don't need to use very often. I haven't used anything but conditioner on my hair for about 2 years. Because of that, I no longer needed a leave in conditioner or products for frizz.

OK, thanks. I have to continue with my prescription shampoo as my dermatologist feels it is very important. I find that my scalp sweats a lot because I exercise a lot and it is very hot here in Hawaii. It's been around 88 degrees since May and much hotter every year. it will be like this probably till Christmas and then we are going on a trip to Australia for a month or so and it will be very hot there. I often think the salt must aggravate on my scalp, but I don't really know. Anyway, I will follow up but I am a bit overwhelmed with the different Drs and health causes that I am having to handle. I hope something helps soon.
Thanks again for your interest.

My husband uses Nizoral, an otc ketoconazole shampoo. Looking at the ingredients it contains two red flag ingredients for those of us with Allergic Contact Dermatitis, ACD, although these are common allergies I do not have either of these. 1. Sodium Lauryl Sulfate, SLS 2. Perfume Bouquet. Not sure what is in this perfume mix, but most often it is Balsam of Peru BP, very common allergen. If not BP other fragrances are common allergens. Yet you are using px ketonazole and you will probably have different ingredients in your shampoo.
Ketonazole is an anti-fungal to kill yeast fungus which resided on the scalp in plaques and often is causes seborriheic dermatitis, but it helps with psoriasis too.
Want to think outside the box since you are still having scalp issues. If your doctors believe it is a fungus and if this fungus is caused by yeast in your system diet can benefit. I have 3 forms of eczema, but the most miserable is my allergic form which the patch test identified my allergens. Yes I changed my environment and the rashes were gone, but even with all my changes I still had internal itching and stinging inside my skin. I required a strong cortico-steroid shot once a year to calm it down. About 10 months after the shots my stinging and tingling would start up again and I would make myself wait the full year for another shot. I was inspired to try diet modification to help control my eczema. I began this diet about 10 months after my annual steroid shot when the tingling was beginning. The results were amazing, the symptoms went away and for the first time in 4 years didn't need this shot.
The book was The Yeast Connection Handbook by Dr. William Crook, MD. Simple book, simple plan but takes disciple. He was a pioneer in believing in alternative medicine to help with skin issues. This is an anti-inflammation diet. Yeast in our system raises our inflation. Its waste products which are released by the residual yeast which lives in our intestines, transfers though the membranes and into our bloodstream raising up our histamine army. We must kill this residual yeast by starving it. It will die out without processed sugar, natural sugar, gluten and few other foods. This is not a calorie diet, but a food type diet, however you can't help but loose weight and following the maintenance program it will not come back. I was happy to loose 5 lbs, but thank goodness I stopped at 15 lbs because I am now too thin for my age. It is a challenge, harder for me to eat like this than it was for me to quite alcohol 5 years ago. Giving up sugar, my mouth used to water with saliva just looking at a piece of candy or dessert. This yeast causes us to crave sugar- it demands to be fed and signals are sent to our brain demanding it. It takes a minimum of 2 months to kill it off, the detox period. I did 3 months as other anti-yeast diets require. My female yeast issues which I battled for decades are gone.I no longer even think about sugar, no more watering mouth looking at others eat dessert. No yeast telling my brain I need it. I no longer need the strong steroid shot. So- could your yeast fungus on your scalp be tied into the yeast in your body feeding it?
Conditioner- I can safely use the VMV conditioner. Also if I wash with the VMV Clark Wash Shampoo for the first wash I can use Grandma's Bar Soap for face and body for the second and because it is moisturizing I use it makes the comb out easier. A small amount of glycerin can be mixed in a spray bottle with water and sprayed on and not rinsed out. I also do this for my granddaughter who has long fine hair and comb out is easier. Some people use apple cider vinegar as a rinse, but as much as I like to consume it I don't like the smell on my hair and also comb out is still hard.
I react to Free and Clear Shampoo and can't figure it out, so I stopped using the conditioner also.
Until you are tested try using products with the fewest ingredients and as mentioned take the time to research all ingredients, especially those with 15 letters in their names. Many on line websites provide allergen information.
November is coming up quickly but make sure now your dermatologist is licensed to perform patch testing. Not all doctors are. You may need to go to a different Kaiser Clinic. Better to learn that now than have to wait longer and schedule with someone else. Once I learned about testing the fastest I could get in, in my area, for testing was 3 months as my derm wasn't licensed to perform this test. Instead I got into an allergist who was licensed for patch testing in 2 weeks. I cannot put in words how miserable I was, to the point of suicide.

My goodness, you did have an awful time didn't you. You have been so disciplined too. I don't know how you have handled it so well but congratulations. It's funny, because my younger daughter has been talking to me about yeast in the body. She goes to a naturopath in Victoria where she lives. I am not sure why my derm has me on the ketoconazol shampoo because she has never mentioned yeast and when I asked her about that she didn't respond much. I am going to look into all these factors. I will find out on Monday when I see my new GP whether I can have the patch testing done with their dermatologist in Maui. Sometimes we have to go to Honolulu for more specialised treatment.
I don't need anything to make me lose weight either. I am on the thinner side and my arms and legs definitely don't need to be any skinnier! Investigating all these ingredients is certainly a time consumer.
Meantime I have decided to use the Tacrolimus Ointment that I was given a week or 2 ago. I think the Clobetasol makes me worse which isn't surprising because it was the shots of Clobetosol that made my hair fall out in a clump. The bald area is feeling less itchy but is still sore. The other areas where I still have hair are less itchy. If this would at least help me for the moment it would be something. I am testing it to see if it works better than the hydrocortisone.I hate having the bald patch.
I also have ittitable bowel and a form of acid reflux called LPR or full name, Laryngopharyngeal reflux. Maybe it is all due to the same problem.
I have a lot to think about and to work with. Thank you

Interesting that you think Clobetasol caused hair loss. That would be interesting to research. It is a potent steroid and steroids only treat symptoms but don't solve the problem. I patch tested positive to 1 of the 5 classes of steroids and it overlaps into 2 other classes so steroid use is limited for me, but in the past the right steroid was helpful.Yet long term use of any steroid is not recommended, have you looked up all the side effects? When my scalp was itchy I lost volumes of hair but it grew back. Yet, all my life I shed hair seasonally but this loss was more severe.
The Tacrolimus is another one of the new immune suppressant drugs that isn't a steroid. It seems like a safer alternative and it is recommended for Atopic Eczema which I don't have. I have used Elidel, another immune suppressant for other forms of eczema and I think it helped some.
Eczema requires research on the patients part. You must become an expert on your type. I think I know as much if not more about my 3 forms of eczema than my dermatologists do. We have no choice but to study because eczema is not a precise disease. Each of us, even with the same type, have different responses to treatment. Trial and error. Even with allergic forms like ACD, no one will have your exact combination. I blindly followed my dermatologist for 10 years and she kept prescribing steroids and never even told me about patch testing. She told me I had eczema and I didn't even know there were types. If I was told I had cancer I would have asked what type. Her advice to stop getting my hand rash was to stop washing my hands and use steroids if symptomatic. Steroids and they only treat the symptoms and do not stop the cause. Yes it turned out most cleaning products affect me. So I wore protective gloves while cleaning only to learn I was allergic to the protective gloves!!! I was so ignorant and trusting of doctors in those days. Yet now I use my Grandma's Bar soap and safe protective gloves (I can use vinyl) and zero hand eczema and my grandson told me the other day after holding hands- he said Grandma your hands are so soft!
You may not have ACD, there are dozens of forms of eczema/dermatitis., but at least you can rule it out and search for other types. Each often has specific treatments. Go to dermnetnz.org the New Zealand Dermatology site. It's the best site out there I have found for those of us not in the medical field. Easy to understand and it helped me diagnosis one of my forms being treated incorrectly. Helpful photos of sufferers.

Wow, you have so much information. You are amazing. I really need to print off all the information you have sent me.
Thank you again.

Once you start doing your own research, just like you are now, you will realize how much there is to learn about your condition. If the our doctor had all the answers we wouldn't be forced to try to learn more ourselves. I was in such incredible pain I was obsessed to learn more and couldn't have done it without the internet. Pain is a real motivator.

Pain and frustration are certainly good motivators. And I learnt many years ago to not put all my faith in a Dr. I had a terrible experience with that when I was young and during my 3rd pregnancy. I was very sick during that time and they kept telling me I was fine. It turned out that I had a full term, still born baby and I nearly died also. A year later I saw a different gynocologist who also involved an internist and they sorted out what went wrong and I actually had another child a couple of years later. The first Drs told me I was never to have another baby and it would kill me. Imagine that and I had the healthiest pregnancy with my youngest child. Ever since then I have questioned Drs much more. I realise that half of the Drs that we consult graduated in the bottom half of their class. When we picked a dentist one time, we called the dental school at UBC in Vancouver and asked who the top 3 graduates were for that year and we went to one of those for our dentist for years. He was excellent.
I am going to look at the clobetasol and see what the side effects are etc. it was definitely that, that caused the bald patch. My hairdresser can even see the red needle marks in a circle around the bald area. It had been my worst area and the Dr concentrated on that area with the injections. She gave me quite a few.
I am so glad you solved your health problems. It just concerns me that it is so time consuming and I am already so busy that I stress myself. I will try my best and will get back to you and @becks to let you know what the Dr says tomorrow.