Wow!  Amen to all of you ladies with these recent posts about nape hair, etc.  I too have noticed that back hairline rising, and yes, my skin feels more sensitive.  In fact, the skin on my arms [where there is now not a single hair] is now more irritated with certain fabrics.  And my dry eye issue sometimes drives me mad!  Because I also have AGA [female pattern baldness] I no longer have enough hair on top even to clip in bangs, much less a full topper.  It's full wig or full scarf in public now, or a cute hat.  Happily, at home my sweet husband is OK with just me, as he knows how much my wig or even scarves irritate my scalp.  But I positively AVOID the mirror, because I hate to see my patchy head.  It truly is a cruel trick of our immune systems, even though we all know there are far worse things to battle in life.  My latest specialist [gastroenterologist] is fascinated with my array of autoimmune diseases, and he is head of the research dept at his practice.  I have two procedures scheduled with him in mid-August.  Maybe one day soon we can connect the dots.

Hi Classical Anne. May I ask what you use for your dry eyes? and has anyone made a link between your dry eyes and your other autoimmune diseases? I spend a fortune on the various dry eye drops and I'm wondering if any work better with this condition than others. I seem to get some limited relief with the ones I use. 

I have 1 or 2 hairs on my arms now and they have grown in a zigzag fashion like they've been singed!

xx

It seems we focus on what is obvious and easily seen like above our forehead.  Meanwhile the scarring alopecia is doing its thing somewhere else, like the back hairline.  I also now notice some loss there.  However, I've always had a mild itch when I leaned back on the sofa, so I figured something was going on there too.

I haven't had obvious dry eyes, but very dry skin on my hairless arms, and to be hairless legs.  Dry like from the inside out, if that makes any sense.

Hi Liz.  Honestly, I haven't yet found anything that worked long term for my dry eyes.  Every time I try another brand of drops, I think "Hurrah!  At last something that works!".  But after a few days I'm waking up with my lids so crusted I can barely pry them apart.  And with eyes wide open, I can barely tolerate a ceiling fan!

And to Wyobalance, my arm and leg skin have always been dry, but never as dry as they are now.  They soak up skin lotion like a thirsty nursing newborn!

As I'm reading the latest posts on the comment wall, I was amazed once again at the similarities we all share.

I HAVE lost hair in the back of my head recently. Those who have followed my story know I wear a hair piece that is bonded to my scalp. Every 5-6 weeks I go have it removed, the piece is washed and my scalp is (delightfully!) scrubbed (boy, that feels good!) and then the piece is bonded once again to my scalp.

About 3 months ago the hair dresser commented on how it seemed the hair in the back of my head stopped growing. I had noticed too that I was going through a season of shedding in that area. Not sure what caused it unless it was stress once again. I've ordered my second hair piece (I need a new one about once/year) and this time they are making the cap piece bigger so it will cover more of the back area where I've lost hair.

My skin has been dry for years. The dermatologist told me to only use skin creams that come in a jar as they are more moisturizing than what comes in a tube.

For those with dry itchy eye, I highly recommend washing them morning and night with baby shampoo. Put a warm moist compress over them when you go to bed at night. This is what my opthamologist recommended and is super CHEAP too! Love it when a doctor doesn't try to sell you on a gazillion prescriptions, creams, etc. Baby shampoo. Huh! 

Yes, we all have so many similarities that it really is amazing.
I'm losing hair at the nape of my neck on both sides.
I have lost about two inches of my frontal hair line.
I have lost most of the hair on my right side above the ears.
I have lost my eyebrows.
I have no hair on my arms and legs.
I have extremely dry eyes. I use Restasis and artificial tears.
I have red bumps at the eyelid where I the eyelashes grow. I use Baby Shampoo when I get these.
I have papules on my chin.
I have very dry skin. Sometimes my skin burns and other times I have have rashes of unknown origin.
I have severe IBS and Small intestine bacteria overgrowth.
I am pre-diabetic.
I have Hasomoto's Thyroid Disease.
Now, they think I have Fibromyalgia!

Enough already! Other than that, I am very healthy. That is if you don't count my heart arrhythmia and the fact that I have a pace maker.

I think when we all connect the dots we are going to be able to help the professionals also connect the dots.

I don't know what I'd do without all of you.

Sally: So this is what Mama called "an organ recital'.  I to have Hashimoto's hypothyroid, and have had Fibromyalgia for 5 decades, I am diabetic, my bowel disease is Crohn's, my most painful disease is Interstitial bladder,   All of these are considered autoimmune.  Also Raynaud's Syndrome.  The only major issue I have outside of the autoimmune collection is severe Osteoporisis.  And currently a gastric ulcer.

For those of you much younger than Sally and I, here's another of my mother's constant quotes: "Old age ain't for sissies!"  Fair warning!

But in all fairness, I still am blessed -- with nothing life-threatening, with a wonderful loving family, and with all of you as support.

Classical Anne And Sallylwess, These illnesses must be related in some way. I wish that I could find a specialist who could look at everything that goes on in my body as a whole rather than being specialised in one area. I currently go to the dermatologist, urologist and ophthalmologist. I also have inflammation in my digestive tract. Classical Anne, I am permanently on antibiotics for painful bladder however when I go to the urologists they just mention urinary tract infections but I always test negative for them. When my bladder is bad it feels like I have terrible toothache there :( xx

Liz, you absolutely MUST STOP the antibiotics! I'm very afraid you have Interstitial Cystitis. Look it up. Then you can email me annejmstrupp@gmail.com to talk about it. And I would suggest changing Urologists, too! There's no valid reason for them to keep prescribing antibiotic when you show no infection -- and plenty of reasons NOT to.

Classical Anne, I have emailed you xx

1. I have suffered with dry eyes ( blepharitis) for a good year or so just prior to the onset of ffa/lpp symptons which was Oct 2012 when i first experienced severe burning tenderness/pain over my scalp (espec on top) & itchiness & creepy crawly sensations along frontal hairline (forehead) & shedding. 5yrs on & the hairloss continues. Also get v sore tiny papules (?or pimples) that come& go all over. Believe i have diffuse LPP as well as FFA. The dry eyes problem is awful but forsome strange reason i haven't had it for a couple of yrs now except, just stopped. I havenever taken any drugs for the ffa/lpp. Just all seem so harsh & didn't want to risk poss side effects etc;my symptons have waxed & waned just as they seem to with those who have taken meds. Was bad about first 18mths then really slow & mild symptons from about April 2015 to March 2017.....then i seemed to have what seemed to be a flare ('out of blue'); the scalp tenderness pain & itchiness became more intense (&had more shedding than normal)..... just such a horrible disorder; at times is so unsettling...sorry to here all these other complications you r all having....i feel many are likely connected also...i have heard dry eye syndrome is commonly accompanies autoimmune diseases but also becomes more prevalent in menopause....trying to connect the dots sometimes 'does my head in'....

Gai, congratulations on finding what really works for you!  I truly hope you can ward off any further autoimmune issues.

Hi :)

I have spoken with my dermatologist (who is also researching causes of Frontal Fibrosing Alopecia) this week about the hair loss on the nape of my neck and also my dry eyes.

He says that hair loss on the nape of the neck is relatively common in people with FFA and especially so in people who are not on any treatment.

Also he says that dry eyes are reported in FFA too especially in connection with Sjogren's syndrome. He also says that given that the fibrosing process does effect the eyelids it may be that the lacrimal ducts are narrower and affected too.

Hope this is helpful.

xx

I don't post often but do follow the FFA discussion.  Just want to share a ray of hope in my journey with this disorder.  I was diagnosed about 4 years ago, although I probably had FFA longer and have been taking plaquinil and antibiotics, plus steroid scalp injections since diagnosis.  I recently stopped the antibiotics because of concern about long term effects.. Hair loss has been slow; I've lost about 2.5 cm of hairline, especially around the forehead.  In the last couple of months I've been using liquid tacrolimus which I spray along the hairline once a day.  Tacrolimus is an ant-rejection drug used for people who've had organ transplants and according to my doc it is very safe for this application. 

I went to the dermalogist yesterday and for the first time ever she noticed some regrowth!  It won't likely bring back the hair I've lost but I'm hopeful that I may not lose a bunch more.  Best wishes to all of you brave people!

Brooke, that is fabulous news.  Also, it is great information for the rest of us.  Liz, I appreciate the information about the loss at the nape of neck also.

Brooke, thanks for sharing the encouraging news about the liquid tacrolimus.   Can you tell me how to get that?   Is it a compounded drug or can you get the liquid form from any pharmacy?

Thank you!

Brooke, that is interesting and thank you for sharing- I have given up on taking anything orally for FFA as I seem get every side effect that is listed, but a topical is something that might work for me- I am going to speak to my Dr about tacrolimus at the next visit. I am happy for you that something is actually working against this FFA!

Just wondering how many of you seem to have diffuse lichenplanopilaris az well as ffa. I have areas of tenderness & sometimes a splintery pinprick pain over top of my scalp. Also last few months have had painful tinyl pimple like (think described as papules in research articles) in many spots all over scalp (top, sides, back, behind/above ears & recently a couple near nape of neck); does anyone experience these.. My   scalp dysesthesia can be anything from just mildly tender (sometimes itchy) to uncomfotably tender; feeling at times in some areas of splinter stuck just under skin  (guess this is from inflammation innervating nerves around follicles)......often have mild itchy sensation along front hairline, & lately along eyebrow area (even tho majority of eyebrow hair lost).....last few days have had a very itchy pinkish red rash on neck up to under chin & across collarbones....don't know if its all connected but presume probably is.......some days (Many, espec of late)..... I struggle with this ghastly disorder..... appreciate all your comments....v difficult having a disease that noone aroundyou (in person) can relate to, let alone NEVER having heard of......i believe i have both lpp (diffuse) and ffa.... appreciate your comments thanks jules

Please keep us informed regarding your appointment with Guy's!  Thank you Airam-FFA

Thank you for this information Airam.  I will look forward to hearing about your appointment.

I've been on a gluten free diet and trying to follow the paleo diet as well approximately 3 months and I do think it has helped.   The frontal area hair loss has slowed down and the rest of my head hair is much thicker and healthier.  Hope this helps.  

JRT I have been on the AIP diet since July 2nd. I feel so much better. More energy, better mood. I feel like the hair loss has slowed and my hair is more shiny and healthy looking than it has been for a long time. My hair was shedding-seeing it fall in front of my eyes when I was working on my computer. That has stopped. All the best to you...:)

I have a square'ish red dent near my left temple and several red blotches along my hairline nearby. I swear this stuff- just when you think things are going okay...! Not sure if this is reaction to the Clobetasol or some other stupid phenomenon related to this stupid disease!!!  

Hi everyone, haven't posted for a bit. I am feeling VERY very lucky - the Minoxydyl (spelling?) and cortisone cream seem to be WORKING. I have new hair growth in the areas that were all white, around my temples! I didn't expect this at all (I wasn't expecting much of anything really). I have to make another appointment to go back in October to the dermatologist. I told you all that I also had to stop straightening and blow drying my hair, so it looks like a mop these days. There are worse things, but my hair and scalp were really unhappy being straight (lol). I look the same as I did when I was 10 or so with a 51 year-old face. Anyway I hope this will continue, I have been on our famous terribly-long vacation for 5 weeks, so when I go back to work now I hope the stress won't burn my hair off again. Take care all. 

Why did you have to stop straightening and blow drying your hair?

Does anyone still color the hair they have left?

Hi JRT, I'm so sorry you've been diagnosed with FFA. I was overwhelmed (still am) but so thankful I found this amazing courageous group. I haven't started the "strict" diet yet but I'm planning on starting after Labor Day. 

I still color my hair but I'm so conflicted as to whether to continue? It's one of the things that helps me feel better about myself so? I just got my eyebrows microbladed and it has helped me so much. 

I feel like I've been having more overall thinning and texture changes so I'm curious about your experiences with minoxidil. Are you applying it over your entire scalp or just the receding hairline area? And I've heard there is some shedding the first couple of weeks?

I'm also confused about topical steroids. The sharp tingling scalp sensations are driving me crazy but I don't know if it's the steroids or FFA. What do you all use to help that sharp pinpoint tingling sensation? 

Illusr8r- I don't have the red dent but my left temple area is red. No idea why? It would be easier to move forward with my life if there wasn't always something reminding us of the awful disease

Hi Beez  Did you experience some hairloss at first when using minoxidil? Worried about losing any more hair. . .

Just needed to vent. After much consideration I went to a different hairdresser that specialises in hair loss. I just wanted  a new cut to help hide my thinning hair. She just wanted to sell me a topper. Thank goodness my derm said this might be the case as another client came along to see her with a wig that she thought didn't need it. I was so disheartened. I am not there yet. I probably will get there but not yet. I was bummed that she didn't listen as it was a big thing for me to go to someone new and put my FFA out there.  Anyway, the topper was amazing so that's good I guess. Back to my old hairdresser today, she is sweet but has no idea really. I have sort of bangs which will do me for a while...... ok feel better now talking to others that get it!

I read quite a bit about the shedding faze after starting Minoxidil.  I was terrified to start it, but finally took the leap about 8 months ago.  I did not shed to badly and I was so thankful for that.  My hair is SO much better than it was 8 months ago.  You can't see straight through to my scalp now, but of course nothing can be done about the receding hairline.  I still color my hair as well.  The extra plus about Minoxidil is that the foam formula adds thickness to the hair and makes styling so much easier!  The bad news for me is that my eyebrows are getting worse.  Hardly anything left.  I have heard about microblading, but I'm scared to do it.  Would love to hear from others about it if you have done it.

I had also lost almost all of my eyebrows too and I was nervous about microblading but my girls gave me a push to do it and I'm so glad I did! It was a little scary at first because they looked so dark and I hadn't seen myself with eyebrows for so long so it was a shock but they're much lighter now. I feel like I have part of my face back which I love. But make sure you do your research on the best person to go to.

Think I'll start Minoxidil tonight. I need to try something because I'm definitely noticing more thinning overall.

Do any of you have the strange "pin point" tingling in your scalp? My entire scalp feels so sensitive. It drives me crazy. Its like I can feel every strand of hair when I brush it or the wind blows. 

Pauliegirl-I'm so sorry about the scleroderma diagnosis. I was just diagnosed with osteoporosis in my spine. I believe in seeing specialists too. Feeling down about all of this today. I've always taken really good care of myself and it feels like my body has turned against me? HATE this so much. . .

AnnieMay, how much DOWN time was there when you did your microblading?  I can't miss any work, but don't want to go in looking scary.  Did it hurt?  How long did it take?  Did you only have one choice of brow color?

I've been microbladed and there isn't any "down time." They are a tad bit reddish (from your skin healing) the first few days and are darker than they'll be, but it's not anything alarming. You can absolutely go about your life after you get them done! 

ChristQ- My guess is that everyone has a different experience but I had mine done on a Thursday and by Monday I was fine. My eyebrows were almost gone so I think it was more "me" getting used to them. They do scab though about a week later and they tell you not to touch them so I wore my glasses to hide them for awhile! It did hurt a little but I asked her to use more numbing cream and it was better. And she had options for the brow colors. I would suggest bringing in some pictures of what you want. I wanted mine to look as natural as possible and remember you can go back for a touch up. For me "baby steps" was a better way to go to start. I'm going back for a touch up in the fall