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  1. #1
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    Default Hairloss, Severe Scalp Pain, and Numbness in Mouth

    TLDR; Noticed hair loss 4 years ago, took Propecia & Dutasteride 6 months ago figuring it was typical male pattern baldness. Had symptoms of severe burning of scalp and numbness in mouth and hands along with broken brittle hairs and scaling in areas of hair loss. Stopped quickly. Pain has continued. Dermatologist conducted biopsy which showed lymphocytic innflamation, similar to scarring alopecia. Everything from topical cortico steroids to prednisone to cyclisporine has not stopped the extreme scalp burning. The only thing that stopped the burning was an anti-fungal terbifine, but symptoms returned after 3 months while still on the medication even though the biopsy tested negative for fungal. Have had multiple biopsies, talked to dermatologists all over, and am desparate for some clear direction. I know this may not be the ideal forum for this but I'm running out of places to go.


    A year ago I noticed some hair loss on the front of my scalp. I figured I was getting older and was simply starting to lose hair (even though no one in my family has hair loss or balding). I went to a dermatologist who proscribed me finasteride, which I began taking. After about a month my head started burning profusely. A deep pain as well as burning on the surface. My fingers and mouth also went extremely numb, and I felt extremely spaced out. Initially I thought i may have the flu as my throat swelled up, i was sneezing and felt extremely ill. I went to urgent care where they thought it may be a reaction to the medicine (even though they had never heard of this type of reaction to finasteride). I stopped taking the finasteride and after about 4 days the numbers and burning went away. I waited an additional day and took one dose of finasteride and within an hour the burning and numbness began again. So I revisited the dermatologist who mentioned I could try one other drug that may help (dutasteride), although he felt i would also have a reaction to this similar drug since i had a strong reaction to finasteride. I took dutasteride for a week and experienced the same burning and numbness. However, this time, after i stopped taking it these side effects did not go away. I understand the half life is extremely long on dutasteride, so i figured these side effects might linger for a while. When the burning was occurring on both drugs i noticed my hair getting extremely thinner, but didnt notice hair really falling out. I also began to feel like I was poisoned. Hard to explain, just extremely ill feeling.

    I visited a second dermatologist to ask what to do, and while examining my hair he stated that it was not male pattern baldness but looked as though I had lichen planopilaris or a similar scarring alopecia. He took a biopsy from the edge of where the burning and pain and hair loss was and it showed lymphocitic inflmammation in line with a lymphocitic based scarring alopecia. He prescribed me doxycycline, and a topical corticosteroid, both which did nothing after a couple months on them. I continued to get sicker and sicker, as a point i could barely get out of bed for a few weeks. I felt like I had been poisoned and my head was frying and there was substantially more thinning and hair loss (again however I never noticed hair falling out). Originally it was a oval shape in the font of my head and had then progressed in a somewhat straight line from the front to the back of my scalp. Hairs that did fall out were like often bent or shortened/broken hairs, which had white crap on them by the hair bulb. After visiting numerous dermatologists who all seemed somewhat perplexed why if i had lichen planopilaris or a similar scarring alopecial that the pain was so severe and why I had numbness of the mouth, lips, tongue, and hands. I even used prednisone at high doses for a couple months, which helped a little but not much and the pain/hairloss/numbness continued.

    Out of desperation one doctor said to try oral terbafine (oral anti fungal), and amazingly after two days of taking it most of the scalp pain and numbness went away. I figured it must have been a fungal infection of some sort (such as tinea capitis), however after a month and a half of taking oral terbafine with much sucess, the cold numb feeling came back to my mouth and shortly thereafter the burning on my scalp came back. This is where I am now. With severe scalp pain and hair loss progressing towards the back side of my head, with bumps and severe dandruff. Its been six months since taking the dutasteride, so even with the long half life of 5 weeks, it should be mostly out of my system. so my hypothesis that I was having a reaction to the dutasteride (either allergic or anaphylactic shock) causing the numbness and firing up my immune system which may have resulted in severe burning not usually seen in lichen planopilaris (autoimmune scarring alopecia) system doesnt make as much sense. However, I am not sure what else it could be. I had the hair loss began before using the finasteride and dutasteride, but never any pain or burning and it was much much much slower moving (hair loss likely began 5 years ago). So i likely already had whatever condition or disease caused the hair loss. However, if it is scarring alopecia (like lichen planopilaris) (which two biopsies say it is) why did the oral antifungal terbafine help so much for a few months when nothing else did? Could i have tinea capitis or a fungus which is hidden under the inflammation or the biopsy just didnt see it since the biopsy was taken at the edge of the hair loss and pain? Or do i have the scarring alopecia and something like the finasteride/dutasteride fired it up? Why so systemically ill feeling? Reaction to the drugs? Even after all these months? And why did none of the treatments help with the severe pain? I just cant figure it out and I am in so much pain I dont know what to do it is ruining my life. Not to mention I am losing my hair at a rapid pace. I recently began taking cyclosporine (immunosuppresant) and it hasnt helped at all. I tested negative for ANA (no lupus) and all other blood tests all came back negative for anything relevant to the symptoms. I am desperate if anyone has any ideas on what it could be or what to do. Lichen planopilaris for a man in his late 20's is rare, and so is a fungal infection like tinea capitis for an adult. Every doctor i have seen, allergist, rheumatologist, and dermatologists, seem confused and perplexed. Any ideas or input or advice is greatly appreciated. Thanks again.

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