Comment

Comment by PamW San Diego, CA, USA on August 23, 2015 at 8:04pm

Little Sad eyes, please, please contact a mental health provider and get some help. I know you are distraught and this disease can be totally overwhelming, but there is help and hope. I want you to think about what you would say to a dear friend. You would tell her that you loved her and needed her with or without hair.

There are many many options available and if you pursue taking medicine, there are drugs that have been known to slow things down. Please pick ups the phone and call a friend or a loved one.

Comment by LittleSadEyes on August 23, 2015 at 7:51pm

So feeling sure that I now have this and no word from my crappy derm, things only getting worse quickly and now looking like a freaky with only a sparse fringe to cover things, how do I reduce or stop inflammation? How do I manage this? I'm still so confused because I have little peach fuzz and some black hairs where my hairline was but I have heard that Tia can happen with ffa, known as the "lonely hair" thing, where there is only very minimal hair left on the recession. I just want ways to slow this down now..: it's happening so fast. The other day I got so overwhelm I tried to take my own life. I really can't do this without hope. Please please help me.

Comment by Lo on August 21, 2015 at 1:52pm

It is encouraging to hear from people like PamW.  I remember getting diagnosed in January, 2015 (after losing hair for 4.5 years prior), and seeing some common names - of women who really helped me realize I wasn't "on an island".  I also remember calling around, trying to find a support group here in PIttsburgh, PA where I live... only to find the closes was 6 hours away.  So... I started my own - and my first meeting is next Thursday, 8/27.  If any of you know people anywhere around this area, please let them know.  I know many of you are over-seas, but there are also a lot of us who live in the states... so I am w/in driving distance of WV, NY, OH, MD... and would absolutely welcome folks at the meeting.  We have a hair replacement lady coming (I use her)... who is wonderful.  She cuts small pieces for me for my bald sides, as well as bang pieces that I tape in. 

Anyway - if there's someone on this forum who you have chatted with, and is anywhere near Pittsburgh, PA... please reach out to them, or have them email me.  Lobertella@yahoo.com

Thanks to you all.

Comment by Annie on August 21, 2015 at 12:26pm

Thanks for your reply, Pam W. I'm glad to know that your discomfort has lessened and the shedding has slowed down. I'm also taking Plaquenil, which I think has slowed the progression of my ffa. Like you, I still have days when my scalp is extremely tender. My temples also seem to have taken the biggest hit as well, but I'm able to manage without a hair piece for now.

Comment by PamW San Diego, CA, USA on August 21, 2015 at 12:08am

Hi, Annie. I still check in every once in a while because I don't get regular email notifications anymore when people post. I continue to take Plaquenil two times per day and also avodart twice per week, which I believe really helps me with shedding. My temples are still bare, but my friends reassure me, over and over, that you can't tell that I have hair loss. At the suggestion of my derm, I had allergy patch testing and discovered that I am allergic to anything that has fragrance. So I changed my detergent, lotion and soap and the itchiness improved. I still have bad scalp days of itch and burn but cope with an antihistamine if it interferes with my day. Most days I cope, but I still have the occasional bad day and always check back to this group for solace and comfort. I will always be grateful to Celia, Deb and all the others who reached out to me.

Comment by Annie on August 20, 2015 at 3:24pm

I'm a little curious about the early members of this support group that we haven't heard from in a while.  I gleaned so much information from Pam W, Celia, & Debs when I was first diagnosed almost two and a half years ago.  I'm just wondering how you are all doing now.  If you don't mind sharing, could you let us know if your FFA is still active, and if you're still being treated by your doctor. 

Comment by Jen on August 20, 2015 at 8:54am

LSE,

I am so sorry for all that you are continuing to go through.  At your age (especially at your age), appearance is so important. I am almost 60 and I am pissed at losing my hairline. However, if I could choose, I would prefer to lose mine and you keep your own. You are younger than my children and my heart breaks each time I see your posts. I pray that the doctors figure out what is the problem and that it is solvable.  From across the miles, I send my heartfelt love and support to you.

Comment by LittleSadEyes on August 20, 2015 at 12:38am

Ps
Doctor recently told me that I am going into menopause because there is something wrong with my brain and it's not producing estrogen. I have to get scans for a tumour :(

Comment by LittleSadEyes on August 20, 2015 at 12:34am

Anyone else notice their recession is quick? Mine seems to be. Plus all those little growy hairs are disappearing. I almost have no hair around my face. Sideburns gone. Widows peak creeping back. I have a fringe so I stopped noticing so much but when I looked today things really have gotten worse. I look like a freak when I pull my hair right back. :'(

Comment by Linda from Cincy on August 18, 2015 at 8:25am

Lo, thanks for the compliment, yes, it's my hair (at this point!), I was only officially diagnosed a year ago although started losing my eyebrows a couple years before that so am sure I've had it for at least that long.   I've lost maybe an inch off my front hairline and a little off the temples/side but my natural hairline was low to begin with and hair is thick so it doesn't look odd except skin a little lighter there and more shiny where hair loss occurring.   It's slow but steady.  Sometimes I think it's stopped but then I have a "flare" - redness, burning, miniaturization occurring. I can't tie the flares into anything specific.   I've been tested for food sensitivities, allergies but nothing significant was found.

I always disliked my low hairline and actually like this look a little better but wish It would stop right here!  Which I know it won't. I started off using steroid creams (which burned) and plaquenil (which I was allergic to) and prescribed Avodart (which I'm too nervous to try at this point).  

So I'm trying to eat healthier, address nutritional deficiencies (D3 and Iron) Looked into hormone imbalances and just started taking supplemental prescribed bioidentical progesterone (in capsule form).   I've been estrogen dominant my entire life (self-diagnosed) and believe that may have something to do with my FFA and other inflammatory autoimmune conditions (eczema, seb derm, rosacea, alopecia areata and now LPP/FFA).   All my skin/scalp/inflammatory issues started developing in my late 30's, early 40's when progesterone starts to drop significantly.

If after six months the added progesterone seems to make no difference I may try Avodart as a last resort as it seems to be one of the few prescription drugs that does arrest the progress of the disease.  

Avodart functions as a 5 alpha reductase inhibitor (prevents testosterone from turning into DHT, which is miniaturizing and killing our hair follicles).   But it was developed for men with prostate issues, not really designed for a woman's body and there haven't been any studies on side effects for women.

Progesterone is also a 5 alpha reductase inhibitor and one more natural to our bodies which is why I'm trying it first.  Progesterone also has anti-inflammatory qualities.  Yes, I'm my own guinea pig and will let everyone know if it seems to help - or if it causes any problems.  I'm under the care of an GYN practice which prescribes bioidentical hormones and will have my levels monitiored periodically so am not recommending this to anyone else at this point because we all have unique medical histories, do no harm and all that jazz!

As far as estrogen I think we unfortunately, get enough supplemental estrogen via our food and environment which is possibly why this disease exists in more "developed" countries so am not adding bioidentical estrogen to my supplementation, although my Nurse Practitioner indicated that's always possible in the future. 

When getting tested for hormone imbalances it was also discovered I am in the early stages of Hashimoto's (low thyroid) and am taking selenium for that at this point and potentially Moducare, dessicated thryoid in the future.   People with LLP much more likely (30% as opposed to 11% of general public) to have thyroid issues, and I know many others in our group have thyroid issues so that plays into this too.  It's so complicated!   Progesterone is involved with thyroid function (well a lot of factors apply but still. . .) which reinforced my belief, that in my particular case anyway, supplementation may help my current health status.

Well enough about me!  I learn so much from all of you, appreciate the sharing, wish everyone well and will share whatever I learn, experience as well.

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