Comment

Comment by PamW San Diego, CA, USA on November 30, 2014 at 11:45am

My mistake. Sorry! How is the cyclosporine working for you? How are you feeling?

Comment by Sas Holland on November 30, 2014 at 5:46am

hi Everyone,

I wish more of you uploaded an profile picture, because It would really help to see how others are coping with this. If you have a wig or hairpiece and how that looks or if you still have your own bangs to cover it or how other eyebrows  look with tattoos or make up.

have a nice sunday!

Comment by PamW San Diego, CA, USA on November 29, 2014 at 4:22pm

Celia, I am almost positive that Rebecca from Germany has been using cellcept these last few months with positive results. Perhaps you can look back on her comments. Good luck and let us know of your decision.

Comment by Classical Anne in NC mountains on November 29, 2014 at 2:15pm

There have been some wise and courageous ladies commenting here.  For the sake of the new folks I'm repeating myself. I, too, rejected all internal medication since diagnosis 18 months ago.  I have been very satisfied with the non-systemic steroid injections, every 6 to 8 weeks, which really kept the loss to a minimum.  But as anticipated, I'm now having a lot of female pattern thinning throughout the top of my head, which is competing with the FFA loss at the hairline.  So, I now have 2 wigs which I love, and find very liberating!  My eyebrows actually disappeared close to 4 years ago.  In the last couple months I have added topical minoxidil to my brows in the morning and was happy to see any regrowth, but way too late to expect a full comeback.   But there are just enough sprouts to make my eyeshadow coloring of the brows look convincing.  Overall, I'm very much at peace with it now.  I wish the same for all of you!

Comment by Celia on November 29, 2014 at 1:42pm

Hello ladies - please let me know how you have coped with Cellcept if you've been on this. Thanks.

Comment by Sas Holland on November 27, 2014 at 2:24pm

Hi Lexi,

yes it's the HSI in Holland indeed. My FFA is in remmission thats why my dermatologist says I can do this, allthough I must take Cyclosporine for about 5  or 6 months. I still did not plan the test transplant though. I still await a phone call of them  with the answers to my questions how many women with FFA have they treated, how long ago was that and how many have kept the hair afterwards for how long.

Also after reading the replies of DebfromCA, Jen, Sad and Rebecca  I have doubts again whether to do this at all. It such a difficult  decision. It's the Cyclosporine that I really hate to take. I don't feel sick now and my receding hairline is not so bad that I cannot cover it with my curly bangs any more.

I can't help you with your pregnancy questions,, sorry, but wish you all the best and hope you don't worry to much, but can enjoy the pregnancy.best wishes!

Comment by Lexi on November 27, 2014 at 4:53am

Hi sas , I read your comments about the stemcell u might b trying out soon, with HSI, is it the one in holland? I had contacted them last yr, and was told that unless it is in remission I cannot go ahead . So basically I'm hoping my FFA will soon stop. And I will deffinetly go try . But for now seems I still have to wait . For me I feel its maybe some hope, but I don't know anyone who did it, although they (HSI) told me they did have patients . I wish u luck and hope it is successful so then u can do the whole treatment. Good luck .

Also I would like to ask , did anyone here get pregnant while having FFA? As I'm pregnant , I'm 38 , have had FFA for 7yrs now, and am a bit worried, so far I'm 30 wks preg and my baby is 3wks bigger than it should. Also have lots of excess fluid. I'm bit worried that its my FFA that's causing this. My dr is doing further blood test at moment to look into the problem of the baby growing bigger and excess water. I'd appreciate if anyone can share their experience if they had a pregnancy while dealing with FFA

Comment by DebFromCA on November 26, 2014 at 11:41pm

I too have declined all meds.  I don't want to treat the symptom - I want to resolve the problem; which I see as an imbalance in my body.  I was diagnosed in 2009 and also told there was no cure.  I went through many stages, including:  "I'll fight it", "I'll accept it and live with it" and "what can I do different for my body to stop it".  I finally changed my mindset and no longer think of this as FFA.  To me it is an autoimmune/inflammatory disease that I focus on.  I am researching and making lifestyle changes in line with AI.  I now have a functional medicine doctor and I have found a sympathetic traditional doctor at my health plan who has helped with diagnostic tests (unfortunately he retires in March 2015).  I am basically now eating a paleo diet - this after years of eating vegan/vegetarian.  The first bites of fish, chicken and eggs were very difficult.  My hard-fast rules are no grains (and therefore no gluten) and no dairy (casein especially).  I have reduced sugar and eliminated soy and avoid processed foods.  I am also taking supplements - especially vitamin D (which I tested low in) and an enzyme/pro-biotic with each meal. My flareups are gone - so far.  I use cedarwood and rosemary essential oils topically on my scalp where I have the hair loss.  The cedarwood has helped reduce any signs of inflammation or itching - but since those symptoms are mostly gone now I continue to use the oils as a tonic.  I apply an oil treatment once a week with bhringraj oil - an ayurvedic treatment for hair.  I do this to nourish the scalp and hair. I try to meditate (I'm not very good at making the time) and reminding myself to de-stress. Stress is a big factor in this and other AI conditions. I'm trying to make exercise a priority also.  I am making an effort to remove toxins from my life including plastics, pesticides and chemicals. I have only recently settled on all of this so the next months will tell.  I will repost if there are significant improvements or failures in my protocol.  Best wishes to all of you fighting the same battle.  Take care of yourselves.

Comment by Jen on November 26, 2014 at 10:33pm

I concur with Sad in Chicago.  When I was diagnosed, I spent days looking on the internet for any sign of a cure. I started taking the injections and to my dismay, the hairloss accelerated so I stopped all treatment and started to figure out how to deal with the forehead which was getting closer and closer.   I have been able to work my curly hair in such a way that no one would notice the missing hairline. I am experimenting with soft headbands when I am in the warm climates. I wear sunhats and tell people that I burn easily  since menopause.  I have not yet used any hairpieces. Recently, I was paying more attention to my makeup, clothing and accessories and I too think that I look good. I use a primer on the little eyebrows that I have left and then dark brown and black eyeshadow. I apply the brown first with an eyebrow brush, then put little streaks of black here and there to add dimension.  I put a bit of concealer under the brow and the eye area looks really good. No one has ever asked about my missing eyebrows. It is probably hard to notice with my hair pulled down so low.  I will not put any medication in my body to stop this.  I am actually having fun at the makeup counter now.  I understand that after surviving cancer, you would not want anymore medication. My Mom and my husband died of cancer and I witnessed the amount of medication they used and the side effects of the medication so I stay away from meds.

Comment by Sad in chicago on November 26, 2014 at 10:14pm

I must admit that after reading all of the medical treatments, drugs, etc. and not getting the results you seek, I am pleased with my decision to simply get on with it, snap in my piece and move on.....my derm told me right away that there is no cure for FFA and I believe it to be true.  Having also being a breast cancer survivor, I have no intention of putting additional chemicals in my body.  My derm says there seems to be a socio economic group who comes down with FFA and there is some research going on.  My worst times are when I am home and not wearing my piece -- embrassassing for my husband (my own thing, he is pretty good about this) and worried about vacations, summer, working out and such.  But everyday for work and for social no one knows and I look damn good.  Anyone who is starting to go through this, start experimenting now with eyebrow makeup and get yourself to a hair replacement person who can fit you with a good piece or wig.  Challenging?  Yes certainly, horribly so.  The end of the world? You may think it, but no, it is not.  Learn to hide it and make yourself beautiful.

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