Scalp problems and loss of hair

Posted by pollyanne @pollyanne, Sep 6, 2019

Has anyone experienced scalp soreness and itchiness with some loss of hair? I was diagnosed with possible Discoid Lupus. The dermatologist is not sure because I do not have the exact matching symptoms. I have been using Clobetasol on my scalp for a good 10 years and recently a different dermatologist suggested trying injections of the same type of solution. She tried the 5mg which didn't help and so she then tried the 10mg solution. Immediately my scalp felt worse. There was almost a lump in one patch and then the hair fell out in that same area. My scalp has got worse since then and I have just woken up in the night with so much itching that I can't sleep. I have been using the topical Clobetasol again but it does not seem to be helping. Has anyone else had similar problems with their scalp. I am so scared of losing all my hair.

@pollyanne,
I have not had this however my mother struggled with something for a couple of years and was going to a dermatologist who kept giving her something and it was not helping. Her hair was falling out and she was very afraid of losing her hair. She had always had very thick hair and so it took a while to show up. She finally got a wig and was just resigned to losing her hair. Finally I was visiting her one time and she was going for her regular weekly hair appointment. We talked about who she was going to since her hair appointments were always very very important to her. I had recalled that her previous hair dresser had passed away unexpectedly. She did not want me to look at her scalp but I insisted and it looked very oozy sort of like a fungus. I asked her if her dermatologist had taken a swab of it and had it analyzed and she said no. I could not believe it because she had been dealing with this for almost 2 years. Taking a sample of it seemed like the first thing you would do. In the end, she went to another dermatologist who immediately took a sample and found out it was a fungus, the type of thing you would get if your stylist did not clean their combs, brushes properly. She ended up taking something similar to valtrex and it cleared up in a few weeks. Looking back she said she had noticed that the new hair dresser used some type of spray on her combs and brushes rather than putting them in the barbicide cleaner that was customary. She did not return to that hair dresser again and never had any more problems. They had tested her for a lot auto-immune diseases and even tried to tell her at one point that it was from stress (my father had cancer at the time). She was of the generation that if the doctor said it, it must be true. I tell this story to make a few suggestions. I assume your doctor has taken a swab of the spots on your head where this is located. If not, please have that done. Also, if you have been seeing the same doctor for a while, maybe you should consult another if possible. Sometimes a fresh pair of eyes is good. Finally, could this be something as simple as a hairdresser not being as hygienic as they should be? Sounds simple but from my mom's experience, no one had thought of it in two years of investigating the situation.

I know losing your hair is very upsetting. I have very thick hair like my mom but recently noticed a lot more than usual falling out when I wash it. Turns out my thyroid is a bit low and we are trying to get the right dosage of medication figured out. But as thick as my hair is, it upset me terribly when it began to come out so freely. I hope you can figure it out and please don't give up just because one doctor does not know. They seldom utter the words "I don't know," This is unfortunate both for our wallets and our health. I wish you all the very best in getting this addressed. Keep us posted please.

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Yes, they have taken a biopsy twice and it didn't tell them anything, which seems odd if it is Discoid Lupus. I do have one of the factors in my blood but I was diagnosed with sjogrens syndrome years ago. This is another auto immune disease that causes dry eyes and mouth and some aches and pains. The blood factor could be misleading them. I don't have any oozy spots but the shampoo that seems to soothe is I believe an anti fungal shampoo. There may be a clue there. Last night when I couldn't sleep I put ice cold aloe that I had in the fridge on the worst area. It is natural aloe from the plant outside. It felt a little better but this morning my husband suggested his hydro cortisone ointment and it has seemed to have taken away the itch a bit. I have seen 3 different dermatologists over the years, but it was my new Dr who gave me the shots that exacerbated the situation so badly. I have Kaiser insurance and my past Dr left to go independant, hence this is why I have a new Dr, but I have paid extra to see what my original dermatologist thinks. I am wondering where else to go and that's when the idea of an immunologist came to mind. This is very stressful and I know how your Mother felt. I'm glad her trouble was resolved. I am 79 years old so I am no spring chicken but I have always been young for my age and I keep myself fit. I always had thick hair but I think that aging does cause the hair to thin, however not like this.
Thank you so much for taking the time to write and I will continue to pursue ideas. This is depressing me.

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@pollyanne

Yes, they have taken a biopsy twice and it didn't tell them anything, which seems odd if it is Discoid Lupus. I do have one of the factors in my blood but I was diagnosed with sjogrens syndrome years ago. This is another auto immune disease that causes dry eyes and mouth and some aches and pains. The blood factor could be misleading them. I don't have any oozy spots but the shampoo that seems to soothe is I believe an anti fungal shampoo. There may be a clue there. Last night when I couldn't sleep I put ice cold aloe that I had in the fridge on the worst area. It is natural aloe from the plant outside. It felt a little better but this morning my husband suggested his hydro cortisone ointment and it has seemed to have taken away the itch a bit. I have seen 3 different dermatologists over the years, but it was my new Dr who gave me the shots that exacerbated the situation so badly. I have Kaiser insurance and my past Dr left to go independant, hence this is why I have a new Dr, but I have paid extra to see what my original dermatologist thinks. I am wondering where else to go and that's when the idea of an immunologist came to mind. This is very stressful and I know how your Mother felt. I'm glad her trouble was resolved. I am 79 years old so I am no spring chicken but I have always been young for my age and I keep myself fit. I always had thick hair but I think that aging does cause the hair to thin, however not like this.
Thank you so much for taking the time to write and I will continue to pursue ideas. This is depressing me.

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@pollyanne, I think my mom was about 79 when this happened to her. I know she was depressed about it too but hopefully you can find the answers soon. Please always know that we are here to help and to be a sounding board. I have found that no matter what your concern there is someone on this site who has some insights about it. So stay connected and know you are not alone. I suffer from chronic pain and this site has helped me so much.
Best to you.

Liked by Lisa Lucier

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@baxtersmom

@pollyanne, I think my mom was about 79 when this happened to her. I know she was depressed about it too but hopefully you can find the answers soon. Please always know that we are here to help and to be a sounding board. I have found that no matter what your concern there is someone on this site who has some insights about it. So stay connected and know you are not alone. I suffer from chronic pain and this site has helped me so much.
Best to you.

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I have had chronic pain for years too. There are so many reasons why a person suffers this way. I seemed to start my pain from overusing my body when I was a fitness instructor. They diagnosed me with fibromyalgia but I am not so sure they are right. I certainly have something and maybe it is connected to my scalp problems. I do have some sort of reumatoid factor in my blood. I don't know the reasons you have pain but I find that a really good ART therapist helps me a lot. I am lucky and have 2 really top notch therapists on the island and they keep themselves updated all the time. The bad part is that they are expensive but it has certainly been worth it for me. You might like to look at trying it. It is called Active Release Therapy and some chiropractors use this form of therapy. You can go on a web site for the ART and see who is in your area. You need one of the higher trained therapists. They call themselves therapists after a small amount of training. Find a top notch therapist and give it a try.

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I am following up with a rheumotologist as I think my scalp is caused by an auto immune problem. I was reading that prednisone may help and I am finding that the hydrocortisone is easing the soreness and some of the itch. I am feeling a bit more positive about everything and it has helped to write on this web site. So thank you. I will also have my thyroid checked because I have had a bit of a problem with that once before.
By the way I mentioned ART therapy but I wrote the full name slightly wrong. I meant to say Active Release Technique. They do have a web site and there could be others that this might help for chronic pain.

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@pollyanne
I am so glad you are feeling more positive. I will check out the ART as I would think they would have some offerings here in Austin, TX. Thank you for suggesting it. I am always interested in anything related to alleviating pain. I came to the conclusion a long time ago that the answers are likely going to be a lot of little things that can help, rather than one big cure-all. The beauty of this site is that everyone has something to contribute based upon their own unique experience and of course everyone shares some experiences in common with others as well. So I believe it is good to know that you are not the only one dealing with certain issues. There is something comforting about that.

@pollyanne, you had said something about being "on the island". Where are you located if you don't mind me asking? And you also mentioned not being a "spring chicken". Actually few of us are. I just received my Medicare card as my big 65th birthday is coming up next month.

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@baxtersmom

@pollyanne
I am so glad you are feeling more positive. I will check out the ART as I would think they would have some offerings here in Austin, TX. Thank you for suggesting it. I am always interested in anything related to alleviating pain. I came to the conclusion a long time ago that the answers are likely going to be a lot of little things that can help, rather than one big cure-all. The beauty of this site is that everyone has something to contribute based upon their own unique experience and of course everyone shares some experiences in common with others as well. So I believe it is good to know that you are not the only one dealing with certain issues. There is something comforting about that.

@pollyanne, you had said something about being "on the island". Where are you located if you don't mind me asking? And you also mentioned not being a "spring chicken". Actually few of us are. I just received my Medicare card as my big 65th birthday is coming up next month.

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We are in Kapalua on Maui and have lived on Maui now for 30 years. I came here from England via Canada and my husband is American. Well, I am too now!
Yes, I cannot believe I shall be 80 next April. I try not to think about it because I still feel young. 65 is young these days.
Do try the ART but if you find someone on their web site I think you can see how much training they have done. You want one who has trained for the whole body and not just a part. They have helped me a lot with my chronic back problems and right now I am having treatment for my arm and shoulder. They have saved quite a few people from having surgery. There always seems to be something having reached this age. It's ok so long as it is not terminal! So far so good. I just need to get my scalp cleared up. I still want to enjoy life.
I will stay in touch and let you know what happens.
Thanks

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@pollyanne I thought it might be in Hawaii. I was born in Hawaii (Queens Hospital on Oahu in Honolulu). We moved to Texas when I was 2 and I visited Hawaii several times. I have been on just about all the islands except Maui. Don't really know anyone in Oahu anymore as most of them have moved as well. But I always am envious of anyone who gets to live in such a beautiful place. You sound like a very young 79.

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@pollyanne

We are in Kapalua on Maui and have lived on Maui now for 30 years. I came here from England via Canada and my husband is American. Well, I am too now!
Yes, I cannot believe I shall be 80 next April. I try not to think about it because I still feel young. 65 is young these days.
Do try the ART but if you find someone on their web site I think you can see how much training they have done. You want one who has trained for the whole body and not just a part. They have helped me a lot with my chronic back problems and right now I am having treatment for my arm and shoulder. They have saved quite a few people from having surgery. There always seems to be something having reached this age. It's ok so long as it is not terminal! So far so good. I just need to get my scalp cleared up. I still want to enjoy life.
I will stay in touch and let you know what happens.
Thanks

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@pollyanne @baxtersmom We went to Hawaii in October, 2017, Maui and Kauai. The only thing stopping me from moving there is that I would see my son and daughter even less being further away and more costly to fly there. My husband sort of dragged his feet about going but did it to indulge me since it was my first travel after my liver transplant, and I really needed it — my son suggested it because he was going to Kauai for a wedding so we joined him there.
Once we got there my husband became the one who now wants to go for a month every year! Pretty pricey, but maybe one of these years before we are too old.
JK

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@contentandwell

@pollyanne @baxtersmom We went to Hawaii in October, 2017, Maui and Kauai. The only thing stopping me from moving there is that I would see my son and daughter even less being further away and more costly to fly there. My husband sort of dragged his feet about going but did it to indulge me since it was my first travel after my liver transplant, and I really needed it — my son suggested it because he was going to Kauai for a wedding so we joined him there.
Once we got there my husband became the one who now wants to go for a month every year! Pretty pricey, but maybe one of these years before we are too old.
JK

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That is the trouble with living here if you weren't originally from here. I usually see my family a couple of times a year. They are all in B.C. Canada. So long as I spend a couple of weeks with them twice a year I can cope. They are all so busy with their family and their careers that they don't have a whole lot of time for me. Maui is a nice place to live when you are older.

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I forgot to say how well you must be doing after a liver transplant and what a traumatic thing to go through. You deserve a month each winter in Hawaii. I hope you do.

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@pollyanne

I forgot to say how well you must be doing after a liver transplant and what a traumatic thing to go through. You deserve a month each winter in Hawaii. I hope you do.

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Thanks @pollyanne I really am doing great and have been since about 10 days after my transplant. I look back with amazement at how well I have done, particularly when I hear stories about people who were not as fortunate as I was. I will always be tremendously grateful to Mass General for all they did for me and for their awesome care. Sometimes when I look back it seems surreal.
One of my friends had another friend who developed liver problems after I had my transplant and she too went to MGH. She had a problem last month and went to a local hospital and didn’t make it. I had either the same problem or a similar one about a month before my transplant but went by ambulance to MGH. I wonder now if I had stayed local, I might not be here.
When I hear things like that I thank God that I survived.
JK

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I am just updating my situation.I have an appointment with the reumotologist in October and an appointment with my new GP on Monday. My original dermatologist had a long phone call with me and she says she feels I have discoid lupus plus a neurology problem which means that my nerves are not firing right. Hopefully the rheumatologist can help me with this. I am also asking for a thyroid test. Plus I am going to ask for patch testing from my Kaiser dermatologist and maybe another biopsy although I hate having my scalp sliced into. I am also using hydrocortisone cream on my scalp. I will see if any of these Drs can help. There is also a possibility of me seeing a scalp specialist.
Thank you to everyone.
Jennifer

Liked by Lisa Lucier

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@pollyanne

I am just updating my situation.I have an appointment with the reumotologist in October and an appointment with my new GP on Monday. My original dermatologist had a long phone call with me and she says she feels I have discoid lupus plus a neurology problem which means that my nerves are not firing right. Hopefully the rheumatologist can help me with this. I am also asking for a thyroid test. Plus I am going to ask for patch testing from my Kaiser dermatologist and maybe another biopsy although I hate having my scalp sliced into. I am also using hydrocortisone cream on my scalp. I will see if any of these Drs can help. There is also a possibility of me seeing a scalp specialist.
Thank you to everyone.
Jennifer

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Hi, @pollyanne – thanks for the update. When will you see the rheumatologist? I'm assuming from what you said that they will make the final determination whether you have discoid lupus, or is this already determined and you will be getting further testing and treatment from the rheumatologist?

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@lisalucier

Hi, @pollyanne – thanks for the update. When will you see the rheumatologist? I'm assuming from what you said that they will make the final determination whether you have discoid lupus, or is this already determined and you will be getting further testing and treatment from the rheumatologist?

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I am seeing him/her on October 16. I am hoping I will have some new blood tests. When I had the testing before I was a bit of a mystery because I had one of the factors in my blood but normally a person has 2 with discoid lupus. They went with discoid lupus because they didn't really know what else my symptoms could be. I am hoping I can at least have a definite diagnosis. I have made a note of a test that another contributor on this site had when she had the same dilemma. If I can eliminate the lupus then I will be one step further towards finding the right diagnose. I have a lot of suggestions from other members on this site and I will work through them all. I see the GP this afternoon and will also ask for a thyroid test. I am trying! Thanks to everyone for their help and suggestions.

Liked by Lisa Lucier

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