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Just diagnosed with Lichen Planopilaris but I think it's Frontal Fibrosing Alopecia
*sigh*
I am not sure what to think. This happened very fast but in a way- slow - and no one paid much attention. "Hair loss occurs sometimes with menopause"
I lost my eyebrows over the course of 2 years- big beautiful "Brooke Shields" brows that shed when touched leaving the just the strong ones left as lone wild hairs. I finally got permanent make up so I had some brows- so tired of drawing them on. Now, am I going to lose the hair on my head too?
Two months ago I got a cold/flu and couldn't quite get better but eventually I did although I always felt tired. I have CKD Stage 3 and so itchy skin and being tired go hand in hand some days. Well, when it was time for my 6 month kidney check up I was so itchy, tired and miserable the dr. ran a bunch of tests and found I had a low b-12...then I triggered a positive ANA...which sent me to a Rheumatologist. I also made the turn into post menopause very fast. I have started HRT because I couldn't handle the hot flashes and night sweats anymore.
Turns out I don't have scleroderma or a connective tissue disease. Onto the dermatologist who did a scalp biopsy and it was confirmed today I have Lichen Planopilaris. Amazing. In 2 short months, my hair has really taken a hit. I fear what the future will bring.
Since I have CKD, all of my doctors have to talk as to whether I can take Plaquenil. My dermatologist seems pretty convinced that it will help my symptoms but I will have to stay on it indefinitely. I am not thrilled about that. Does anyone have experience with treatments for Lichen Planopilaris?
Anyway, I'm sad, mad and depressed. What a rollercoaster. Thank you for listening.
Replies to This Discussion
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Permalink Reply by illustr8r on
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Hello?
Anyway, I found out, as I suspected that I cannot take Plaquenil because of my kidney status. Being at Stage 3 increases my chances to suffer the more severe side effects of this drug. As much as I miss my hair I think missing my vision would be much much worse, plus I am artist and Planquenil can mess with how you see colors.
I guess I just have to hope that clobetasol helps slow things down and I achieve burn out soon. I think I have had this condition for over years.
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Permalink Reply by Beez on
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The LPP diagnosis includes FFA. Some derm docs think that FFA is a variant of LLP. The follicles show similar lymphocytic inflammation. The symptoms are a little different and so is treatment, so discuss that with your doctor. I have tried Plaquinil and didn't notice any difference after 8 months of treatment; clobetasol did nothing, the steroid injections may have slowed things for awhile and reduced acute inflammation but were not the answer for me; I started to have some loss of tissue at injection site. I think we are all on the FFP merry-go-round.....
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Hi Beez,
I saw your note earlier this morning that you wrote to the FFA group. I'm still trying to figure out this forum and I couldn't find it.Thank you for replying to my post so I could write you. :)I was a lurker here for a long while when I was searching for answers to my eyebrow loss. I was quietly freaked out when every related post mentioned FFA. I grew to accept my fate, got permanent cosmetic micro-bladed brows. I you haven’t done that- I highly recommend it. Do lots of research and look for someone who actively posts their work and is willing to answer your every question. I burst into tears when I got my brows done. I was so happy to look like myself again.
I have fine hair, but I had lots of it. Over the past 4 years I’ve been adjusting my hairstyle (shorter and shorter) to accommodate "the shed" and receding temples. All of this corresponds with my march to menopause. Even though I had hair loss I never had burning and itching till recently. I have lost body hair-everywhere- even “there.” I have Petechiae all over- Derm seems unconcerned. I have the weird feeling of an invisible headband around my forehead.
My hope that the previous hair loss and the loss of my eyebrows was it-isn’t the case. That is tough to accept.
I don’t know if you itch all over or not. I take a Benadryl when it gets too bad. I use Nioxin shampoo/conditioner daily and Clobetasol sparingly. I think it’s all for not. I’m hoping for “burn out.”
My last ditch effort is to try the AutoImmune Diet. I decided to start that in June. I’ve cut out a lot of food that’s not kidney friendly-so trying this diet won’t be that big of a shock. I’m going to give it 6 months to see if the itching stops and if the hair loss slows.
I have bought several cute hats. ;) *sigh*
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