Replies to This Discussion

Permalink Reply by Lo on June 15, 2017 at 8:48am

There are answers to our loss... albeit not perfect ones... but ones that will cover the loss. I'm so sorry that you have this... but am happy that you found this site. A lot of support and love and up to date information about the disease and some treatments that have been effective for some. It's s frustratimg road for sure ... but one you will get through. I would go to the doc in Paris and seek some treatment asso. There are women on here who have successfully slowed down their loss with some treatment. Others have found success with diet changes. Others have found themselves again after finding the right hair piece or using the intra lace system.

Wishing you a better nights sleep and sending good wishes your way.

I've had this since I was 37 or so... I'm 46 now. I can still style my hair in s way that covers the loss... but also (early on) found a woman near me that specializes in hair replacement and she's been s God send. I have small pieces that I can tape to my scalp along the ears where I have the most loss. They blend seamlessly and stay in for 2 or 3 weeks.

You will be fine. Deep breaths and positive thinking go a long way.

My prayers are always with all the women in this group... and that means you now!

Best wishes,
Lori

Permalink Reply by Halfbakedwho on June 15, 2017 at 3:28pm

Thank you so much Lori. I want to look into what I'm going to do, because it seems to me (maybe since the DX) that it's accelerated. My forehead is starting to look a bit high. I like deep breaths and positive thinking, thank you.

Permalink Reply by pauliegirl on June 15, 2017 at 10:33am

Hell there,

God bless you. I along with all understand the shock and tummy aches and difficulty sleeping. Such a crappy disease where so very little is understood. 

I am 50 and was diagnosed 1.5 yrs ago. I think you can read my story otherwise? Please lmk if not. Just wanted to mention I also have autoimmune issues. Noted fingers got bluish when I got cold in my late teens. Went to dr---autoimmune numbers were way out of whack (and remain so). Diagnosis Raynaud's disease. Other than that I just had terrible migraines from the time I was 16. Fast forward to diagnosis of FFA which is also autoimmune. While there is autoimmune on both sides of my family (rheumatoid arthritis on one side; lupus on the other) there is no family history of this rotten disease. I agree...is it really so rare with all of us having it?? Point of interest...I got mono at age 16 and after that started with the Raynaud's and migraines. There is some research out there that says the mono virus (Epstein Barr) could have triggered these things. 

My loss hadn't progressed from what I (and my hairdresser) saw for 16 months since diagnosis. End of March I got Botox injected as a near last resort for the terrible migraines. They inject a bit into the forehead and also along the front hairline, then along the lower back hairline and neck/shoulders. I was concerned and asked the neuro if he thought this was safe with the FFA. He said to ask my derm and she said it was fine. I blame no one because this is an uncommon disease, but my FFA flared and I have lost a bit more at top of forehead and perhaps a tiny bit on my one side. So, no more Botox for me. With the latest flare I have changed up meds (added topical tacro, stopped topical steroids as skin getting too thin, and also added Doxy and Finasteride (I also take Paquenil, Vit D3, Biotin and Iron)...FYI. Hoping the Botox which wears off in 3 months total will cause the FFA to quiet down again. 

I so far can cover mine with the rest of my hair...but the wind...:(  I might look at the lacing if I can find someone local (I am in a Chicago suburb). As well, I am going to meet with a hair replacement Dr in chicago next week, understanding it's a crap shoot that I could get transplanted and it could come out. 

Of all the research that is done out there I really hope someone can figure out this disease which really seems to be on the rise.

Best to you...be kind to yourself as this is a most challenging thing to wrap your head around and on some days, to live with. 

Jamie

Permalink Reply by Halfbakedwho on June 15, 2017 at 3:33pm

Hey, Jamie thank you so much. I have used Botox for some forehead wrinkles - the last time was six or seven months ago. I don't connect Botox to the hair loss... it seems that stress wacks out my whole body (in that my GP is right) and I react more strongly than other people.
I want to look into getting lacing and grafts - though it's still early and not noticeable unless you really look - given its progression, and my tendency to err on the side of overly anticipating (stressed-out person) I prefer to know what I can do. Thank you for kind words.

Permalink Reply by Classical Anne in NC mountains on June 15, 2017 at 11:32am

Lo and Pauliegirl have given you such great responses! We are all in this together, and that helps a lot.

Re your autoimmune question, there's no doubt that one tends to lead to another ... and another ... I have had Raynaud's and Fibromyalgia for many decades. But following menopause, I then developed more and more autoimmune issues. The toughest and most painful every day is Interstitial Cystitis, diagnosed in 1997. Then Crohn's in 1999, then Hashimoto's hypothyroid in 2000. Then a nice, long break while I adjusted to those daily challenges. In 2012, after another emotional loss of a parent, I somehow developed a life-threatening C-diff infection, requiring transfusions and lengthy recuperation. Shortly after that came the FFA diagnosis, along with rosacea. This has been more emotionally painful than others. Finally [I hope!] last year I was diagnosed with Type 2 Diabetes. All of these are thought to have at least an indirect autoimmune connection. I might add that 1999 also brought diagnosis of severe osteoporosis, requiring intravenal infusion therapy. I have not seen that officially linked to the autoimmune response, but it's easy to believe that it might be, as my bones were eaten away far beyond the standard medical range. Literally, off the charts.

So it brings me to wonder how many of us have had the antigen HLA-B27 pinpointed. In 1995 I had a very painful shoulder problem that required surgery. At that time, a top rheumatologist in Atlanta suggested that the HLA-B27 antigen was a common thread with Fibromyalgia, and that in the future, it could mean developing a number of diseases related to the linings of particular organs. Since then, sure enough, the lacerated lining of my bladder [Interstitial Cystitis], the diseased lining of my colon [Crohn's Disease], and currently the ulcerated lining of my stomach [Peptic Ulcer]. I don't think it's much of a stretch to say that the root [sorry 'bout that] problem with our FFA is the lining of the scalp.

Well, this has truly been what my Mama used to call an "organ" recital. I'm sure many of us on this site could name similar organ diseases, and welcome the chance to talk about them among our internet friends, while hiding them from the people we see every day. Few know that I take 37 prescription tablets daily, along with many supplements. But it's good to have this web of FFA friends who allow us to unburden without shame. I am so grateful for these dear ladies, and wish the very best for all of them.

Permalink Reply by Halfbakedwho on June 15, 2017 at 2:01pm

Thank you all so much for your welcome and support. It's good to know I'm not alone. I am very anxious, just an anxious, anxious depressed person - and it helps and doesn't help to know that the autoimmune and psychological create a psychosomatic base that goes around in a loop -
That's what my GP said to me this morning, after I went to see him after a sleepless night. I feel calmer but rather itchy (eczema flare-up from stress/fatigue).
It does seem that all of this is getting more intense as I pass through menopause. In that - have always been sensitive, now the volume is turned up.

I had been using Ritalin for my depression - it brings me up- but my GP this morning said it's a mistake - some of the side effects include: ALOPECIA, and ITCHY DRY SKIN. Well, duh. I am on a different antidepressant too, and so today I got by without it (Concerta). I am tired, but feel more "together" somehow too. I'm sure I'll sleep better tonight as well.

I have a lot to learn - a lot of the medicines you list I'm not familiar with. I don't like that I'll have to take even more meds, and will worry about more side effects. But if this hair loss can just slow down a bit, again, that would be "good enough".

Permalink Reply by Halfbakedwho on June 15, 2017 at 3:24pm

It's a drop later. Am scared again. Dared to look at my forehead, noticed that my hairline has receded a good two centimeters on top. Before I was always only looking at the sides - scared to look at the top. My hair further back stil covers this, but I feel so ashamed - and think it's foolish - silly of myself to feel ashamed - but I do.

Permalink Reply by Anne Louise on June 16, 2017 at 4:26pm

So glad you found this site, it has been a lifesaver for me, especially when I was first diagnosed. I just wanted to comment on your antidepressants. Both Ritalin and Concerta are typically used for the treatment of ADHD; they are stimulants, so a common side effect is sleeplessness. When you mentioned you got by for a day without Concerta and then stated you are tired, I'm quite certain that would be due to not having the Concerta, even for a day.

You may want to consider asking your doctor about Wellbutrin. It is an antidepressant that has been effective for people with depression and ADHD as well. Having your sleep out of whack just piles onto the challenge of facing this FFA! I am a school nurse, so am familiar with these meds and effects. Hope that helps.

Permalink Reply by Camille on June 15, 2017 at 4:47pm

I wanted to reply to you because of my common autoimmune issues. Seven years ago I lost all the hair on my limbs and developed "Burning Mouth Syndrome" in one week. Dr blew both off!
Now the FFA which my dermatologist diagnosed easily by the white band and pattern of loss. I am convinced they are all related. Hard thing for me when I've taken really good care of myself all my life! We haven't done anything to cause this awful disease.
So glad for this forum!

Permalink Reply by Camille on June 15, 2017 at 4:52pm

I got my first autoimmune disease six months after a surgical menopause. Now I have four..My GP says insensitive things to me too but I think I'm getting brave enough to fire her and try to find a more empathetic Dr.

Permalink Reply by Halfbakedwho on June 15, 2017 at 4:57pm

My gp is off and on empathic. Today, pretty decent, got him early in the morning. Other times, not necessarily insensitive, just ignorant. "Diagnostic overshadowing" is an issue with him, b/c he knows he's dealing with an anxious, depressive person. So everything is just reduced to an anxiety symptom. Frustrating thing is stress exacerbates all of it so he's not entirely wrong. ENough, Am going to sleep now I hope.

Permalink Reply by Classical Anne in NC mountains on June 16, 2017 at 11:36am

Hope you slept better last night. It really does get easier to handle after time. The initial shock is quite simply horrifying. We all obsess over every strand lost in the beginning. But it truly does get better. I suggest Retail Therapy! Go out and buy every cute hat and trendy scarf you can find!

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