Skin and 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.

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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

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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.

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Hi @pollyanne - I too have head itchiness and hair falling out.. My Dr. suggested I take Zinc and Biotin supplements. I also added Dove derma care Scalp shampoo. Things seem to have improved ( not 100% but maybe 80%) My hairdresser also mentioned that low iron can cause hair loss. We have not been eating nearly much red meat as we used to so may try to add a little more to the diet. I realize none of this may be helpful to those with more serious scalp problems but thought I would pass this along for what it's worth.
Best to all
Ainsleigh

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@ainsleigh

Hi @pollyanne - I too have head itchiness and hair falling out.. My Dr. suggested I take Zinc and Biotin supplements. I also added Dove derma care Scalp shampoo. Things seem to have improved ( not 100% but maybe 80%) My hairdresser also mentioned that low iron can cause hair loss. We have not been eating nearly much red meat as we used to so may try to add a little more to the diet. I realize none of this may be helpful to those with more serious scalp problems but thought I would pass this along for what it's worth.
Best to all
Ainsleigh

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Hi, @ainsleigh - have you been able to isolate which of the treatments you introduced at your doctor's suggestion — the biotin or zinc — or the new shampoo have made the biggest difference in your head itchiness and hair falling out?

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Hi @ lisalucier- No I have not. The shampoo was my idea but it is possible that neither that or the supplements helped-Maybe the placebo effect?! I
wish I knew.

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My scalp is tender, sensitive, sort of burns in spots and the hair is coming out. My hair is getting so thin with bald spots. Anyone have had this and got it fixed? What will cure this? thanks.

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Hi @mhalpin that must be so unnerving having this happen to you without a known reason. @ainsleigh and @pollyanne have both expressed hair loss and scalp problems and may be able to share their experience and offer their support.

Back to you @mhalpin, how long have your been experiencing this symptoms?

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