I found out that I had LPP after suffering with scalp itchiness and a series of soft, mushy lines across the top of my scalp for 5 months. My dermatologist did 3 punch biopsies and read the results of the pathology to me on February 15, 2016. That was the most devastating day of my life so far. He did say fortunately that this condition was localized to my scalp and after several lab tests it was not autoimmune system related. I guess the only real good news. I did a little bit of research about this condition after my diagnosis but it would make my ears ring and I felt as if I was about to blackout each time I started reading anything about it because every medical document said the hair loss was permanent. I had decided ignorance was bliss. My derm had already started Kenalog injections 3 months prior to my diagnosis and we continued on with that regimen every 4 weeks to keep it under control, in conjunction with that I was applying Clobetasol 0.05% foam twice daily to control the itching. By this time my hair was beginning to fall out in vertical lines where the mushy lumps were on the top of my head. In April of last year I had convinced myself that I wanted to add an oral medication to try to flush this stuff out, so, after much hesitation on his part and trying to advise against it, my derm conceded and started me on Acitretin 25mg. He also wanted me to get a second opinion on my diagnosis and treatment so he referred me to the University of Texas Medical Branch (UTMB) in Houston. I had been on the oral medication for 1 month before seeing the second dermatologist. Shortly after beginning the Acitretin I began to fall into a strange depression that I thought was just tied to the diagnosis and dealing with my hair loss. When I saw the derm at UTMB I had asked him if my hair would come back, and he replied "No, but you would be a candidate for hair transplantation after it burned out." I had also asked him about Platelet Rich Plasma injections as a method of helping to repair my scalp, especially where the steroid injections were starting to cause thinning and atrophy of my scalp, he replied, "no, PRP will not help you." I was completely dejected and fell further into depression. At this point, May 2016, I had become reclusive, withdrawn, had developed a fear of darkness, began obsessing about my mortality and was experiencing panic attacks and heart palpitations. My husband got online and read the side effects for Acitretin and realized the medication I had insisted on taking was causing these adverse effects I was experiencing. I promptly stopped taking the medication after discussing with my derm. The good news - my LPP started to burn out in June 2016. The bad news - I was about 80% bald on the top of my head and suddenly stopping the Acitretin had brought on a wicked case of telogen effluvium. By September 2016, a full year after it started, the LPP had left me with a large bald area on the top of my scalp and 40% loss of hair in the unaffected areas due to TE. I had become extremely self conscious about my scalp and would not leave the house without a bandana or ball cap. But I had gone back to work after a year and a half as an esthetician, working again for the dermatologist who was diagnosing and treating my LPP. It helped pull me out of the depression. The pain and itchiness from the LPP was beginning to subside and I was returning to my normal self, even though I was half bald. Despite the discouragement I got from the second opinion Dermatologist at UTMB regarding PRP, my Derm was encouraging me to give it a try because it would not cause a flare up of the LPP and he knew I that I was determined to do it anyway. I had worked with Platelet Rich Plasma hands on with another Doctor and even wrote a college research paper on it, so I knew the benefits to trying the injections, and I did not have unrealistic expectations. I only expected to get back the subcutaneous fat that the steroid injections had displaced. If nothing else I wanted my scalp to return to its normal skin tone and not to be so lumpy. But I was also intrigued by the possibility that PRP would help encourage hair growth, as it is being used for androgenic alopecia. I had my first PRP treatment on January 19th of this year. My scalp instantly looked and felt better - it was not as red, the skin was becoming more solid and, low and behold, I was started to see hair follicles where it had been as smooth as a babies butt. I had my second PRP injection treatment on March 6th, just 2 1/2 weeks ago, and my scalp continues to improve. I got my hair cut after 11 months and my scalp is almost completely covered with hair. The subcutaneous fat is back, so no indented areas. People who have seen me through this cannot believe my rapid recovery. As I stated before, I work for the dermatologist who treated me, so when we have patients that come in with any type of hair loss I get to show them my before and after pics and they are amazed and encouraged by my story. I know I may not be the typical LPP case, but everything I read and heard on LPP said that hair loss is permanent. I'm here to say that it's not. I have attached my pictures from December 16, 2016; February 7, 2017 and March 23, 2017. These photos have not been retouched. This is the progress that I have made over just 3 months. I hope you are encouraged by my story.
I was happy to see your post on this site, as there are just a small amount of scarring alopecia victims compared to the vast majority of non scarring alopecia sufferers. I was told that there are several things that can trigger this disorder, besides stress, extremely hot sunlight on your scalp and also antibiotics and I had all 3 during the 3 months prior to my symptoms. I was diagnosed 4 years ago and at first opted for the Clobelasol foam twice daily after a year I saw no improvement. I decided to only wash my hair every 3 days as to avoid any more hair loss, so the hassel of ruining my carefully arrange remaining hair being disturbed on my non washing day was becoming very time consuming. I decided to try the oral medication Pacquinil, I had immediate side effects, fast beating heart and depression, so I stopped and decided on better hair management, as ruining my remaining health did not seem worth it. I found hair fiber sprinkles (Caboki) which really filled in the balding areas, great company sends out sample amount free only 2 or 3 dollars to ship. But I could see how things were heading with my hair so started to grow it longer so could pull it up on top my head in an updo which covered part of the bald spots. I have now discovered Sally beauty supply hair extensions, which I buy 12" hair on a line that is about 5 feet long. I cut off sections that fit across the top of my head and I just blend my lower hair over it as the top of of my head has very little hair left, but I think it is through falling out. I will ask my derm about the PRP treatments, although she considers herself to be very expert in the hair loss field having trained under a universally know doctor in the CA bayarea, and she has never offered me this treatment. She did very quickly know exactly what I had and ordered biopsies which confirmed it. I have followed a lot of blogs and information sites on this subject and it seems like the oral medications really don't do anything long term and ruin your health along the way. There are times for everyone where you think things are better or your symptoms get worse and then you attribute it to the starting or stopping of medications. Really the symptoms do change getting better or worse weather you are treating the condition or not, as I have found when for 2 years I did no treatment of any kind. After 4 years it seems like I have reached that "burn out" stage I read about and now it is just about either finding different ways to hide the hair loss. I did not like the feel of a wig and have found ways to work around it, but I will look into the treatment that is working for growing new hair. Thanks for all your information, all of us with this condition need to help inform each other as new treatments are found to work.
I live in Brasil, and I have LPP (Líquen Plano Plilar) too. I liked your case and I would like Know what is PRP. I stay happy whit your sucess.