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Comment by ElleMN, USA on January 23, 2013 at 6:58pm

Hello ladies! I joined this group in Nov but haven't contributed to the conversation yet. I was overwhelmed as I read through the threads about how similar my story was to so many. I'm 45 and was diagnosed Feb 2012 when I started working with Dr. Hordinsky at the U of M. It was my eyebrows disappearing that got my attention, and then the hairline slowly followed; all of this really starting 4 or 5 years ago. I have an 8 and 5-year old so I've been pretty tired and sleep deprived for most of this time so who knows when it really started. In 2009 I had been suffering from lots of eczema and psoriasis, and multiple illnesses in 2010--everything my kids brought home--and some joint stiffness so I was tested for lyme, lupus, celiac, allergies, thyroid, everything with the only abnormality showing up being low ferritin. I was relieved to not have something life threatening. I worked with one dermatologist who biopsied my scalp and diagnosed LLP. I then found Dr Hordinsky through CARF and she diagnosed me with FFA. The unknown aspect of FFA is what is scary to me, just not knowing how bad it will get. I once said outloud,"I wish my eyebrows would come back so I wouldn't look so weird" to which my daughter said "mommy you just look like you." :)

My current treatment involves steroid injections every 5-6 weeks, 5% rogaine foam at night, desonide on the eyebrows during the day. I also just started using the generic Retin-A on my forehead to build up the collagen to mask some of the blue veins showing through my skin (extra bonus using it on other parts of my face! bye bye wrinkles!) I also get indentations almost every spot I get injections but they bounce back after a month or two.

My hairline still keeps moving back, but I do see some hairs poking through. One thing my doctor mentioned is that this is a disease of caucasian women, which I find interesting. I wonder about an environmental trigger (watch the movie Plastic Planet if you get a chance). There is no alopecia in my family. I eat organic food most of the time. And I now eat gluten-free, soy-free, dairy-free when I can (this is new since the FFA.

Thanks for starting this group, and thanks for sharing all of your stories. It has helped me a ton.

Comment by PJ - MN, USA on January 23, 2013 at 9:11am

PamW - I forgot to mention on my shampoo, I leave it on my hair for 3-5 min then rinse it off.
Rebecca - I was told the dents go away or they smooth out. The timeframe varies person to person, but usually takes months to a year. I'm going to ask my Dr again about that.

Comment by PJ - MN, USA on January 22, 2013 at 11:51pm

I was diagnosed with FFA with a scalp biopsy. The redness on my scalp varies, not sure why. My hair products: Shampoo - rotate every other day between Head & Shoulders (zinc) and DHS Zinc Shampoo; Conditioner - Free and Clear brand; Hairspray - Free and Clear brand. This regiment was prescribed by the Dermatologist I see at my first appointment. I was told previously there was no regrowth too. I didn't think to ask her about it, I was too excited to hear things were better I guess. I'll make a note to ask that at my next appointment in a few weeks. I wonder if the histamines/allergens has anything to do with things. I do have alot of allergies. Something to keep in mind when I take allergy meds or get my allergy shots. I'll have to see if I notice a difference.

Congrats Robyn! Enjoy being a grandmother.

Comment by PamW San Diego, CA, USA on January 22, 2013 at 10:17pm

Hi, everyone! PJ, I am so glad things are going well for you. I am curious about what "hair products" you are using? Also, were you diagnosed with a scalp biopsy? The reason I asked is because I have been told that regrowth is not possible, so I am curious about your regrowth. Also, I have been taking Plaquenil and Actos and STILL have redness on my scalp. Do you?

Robyn, congrats on becoming a grandmother. I can't wait! My kids aren't married yet . . . but I am starting to get the desire.

Rebecca, almost all of us have been diagnosed within the last year, and some have just started taking meds. I have been taking the generic for Plaquenil for 6 months now and I think it is slowing things down - but who knows? I don't know what I would be like without the meds! Some medication takes months to build up enough in our body to begin working.

There is a page on Facebook called LPP Let's Put Out the Fire and so many of the members claim they have had reduced symptoms and success with various diets - Gluten Free and Paleo. I always felt like food has something to do with this because when I wake up in the morning my scalp feels normal and as the day goes on, I become itchier or more red. Recently, someone suggested controlling histamines in your body -- made me think . . .

Anyway, Rebecca you are not alone. All of us have had terrible days. The thing is that you have to put one foot in front of the other and keep going. Your kids don't care about your hair one bit -- they care about your heart. Even if you have to force yourself -- stay busy. Look into your kid's eyes and not at mirrors. When I am busy, I don't think about FFA. I think anti-depressants make sense if they make you feel better. Good luck.

Comment by Robyn, Melb. Australia on January 22, 2013 at 8:47pm

Hi ladies,
Just got onto the site and have read comments in response to Rebecca. Hi Rebecca, I'm new to the site also. I do hope the support from others will help how you are feeling. It's good to know others are experiencing similar feelings (although sad we all have this awful condition). Reading the comments about wigs has given me some confidence to check that out when I feel I need to. I guess I still keep hoping it won't get to that stage, but I have to be prepared I think. I have been on Plaquenil for almost 2 years and it's possible that might have slowed my condition, although it sounds like that might be hard to tell as everyone seems to have varying degrees of FFA. My specialist feels part of my condition is FFA and part of it is post menopausal hair loss (double whammy!)she is keeping me on the Plaquenil as I have had no side effects and she does feel it is helping. Most of my hair loss is top hairline but I have also thinned on the sides over the past 6 months. I have curly hair and so far my hair style is hiding most of the problem but not sure how I'll go if it progresses but more. KarenGinny mentioned a hat but I have to say I look terrible in a hat so hope I don't have to resort to one!

I couldn't go without mentioning that I have just become a grandmother! Tuesday 21st Jan our granddaughter Chelsea Elizabeth was born - we are so excited and looking forward to getting to know her. My daughter-inlaw and Chelsea are doing well and my son is learning all about nappies!
Enjoy your children Rebecca - they grow up all too fast. I can't believe my little boy is now a Dad! I agree with others, they will love you no matter what happens to your hair!

Comment by PJ - MN, USA on January 22, 2013 at 6:09pm

KarenGinny - I assume that is the Drake Univ, but didn't ask. You should contact them and see if they have a Dermatology dept and see if they are accociated with a clinic that sees patients with FFA. I will let you know when I hear more.

Comment by KarenGinny - Iowa, US on January 22, 2013 at 5:50pm

To Rebecca, Glad you found our group, although sorry you are here because of this terrible condition. I started having my hair problems when I was 45, diagnosed with FFA last March at 46; so I was one of the younger ones. I have two younger sons, ages 13 and 10, so I know what it's like to try to be active with them and go to their school activities and be so self-conscious and wonder if anyone notices my awful hair. I just do my best to style my hair with long bangs and wear a hat outside if it's windy. But you must know that your children will love you no matter what you look like. It make take some time, but I think we all eventually have to make peace with our condition and try to continue on, and realize that we are lucky it's not a life-threatening thing. I went through some very depressing moments with this, but realized my family needs me and sitting around crying won't help it get better. PJ - Is that Drake University in Des Moines doing the study? I live in Iowa and would be very interested in participating in something like that, and in seeing other doctors for their opinion. If you have any more info about it, I would love to hear about it.

Comment by PJ - MN, USA on January 22, 2013 at 5:21pm

Hi Everyone! Just wanted to give a report from my Dr.appointment yesterday. She said I had turned a corner on the disease - a good corner. Yea!! At least for now. Apparently things look better. I have new growth, less redness and inflammation. Even some fuzz where I used to have eyebrows! Of course things can always change with this disease. But for now it's good news. I am not as advanced in the disease as it sounds like a lot of you are, even though I've been dealing with it a few years. My treatment has been very conservative. I am not on any oral meds. I've only changed my hair products, getting steroid injections, and have used Clobetasol once. She was going to put me on Doxycline to help with inflammation, but this drug is on backorder everywhere. She does want me to use Clobetasol 3 times weekly just to keep inflammation down.I talked to her about Plaquenil and Actos. She said Plaquenil was not necessary now for me, but we did the bloodwk and I will get an eye exam done in case things change. Then she will put me on that. Felt it would be the best first oral med to try if needed. Actos she said had to many side effects that were not worth dealing with at this point in my stage of disease. I did not have any injections in my scalp done yesterday, just in my eyebrows. The steroid injections last time did give me a dent or ridge as some people say. It is a very common side effect that takes a long time to go away. It is from the steroid getting injected to deep and goes into the fat layer. Do not put any other steroid on those areas. I am also going to have a Patch Test done which is an allergen test specifically to see what your skin reacts too.

I told her about this website and gave her the name and address of Dr Harries. The study I mentioned previously on a comment I left about the Univ of Minnesota, is actually being headed up by Drake University. Something like 10-12 other university/clinics from all over United States will be involved. Hopefully this year sometime.

Rebecca - your family,children and friends will love you no matter what you look like!! Our children, I think, have been taught and have learned to be more tolerant of others than older generations. They will remember your sadness growing up more than some hairloss. I encourage you to find a support system to surround yourself with. Get out and enjoy life, you can't dwell on this disease! When I found out I had FFA I was actually relieved. I was so happy I was not dying of some strange illness!! Hairloss is nothing compared to death. There is no cure for that. I do get bummed out when I think someday I will have to wear wigs or hats all the time. (I hate hats!) You just have to keep it in perspective and realize there are worse diseases to have in life. Sorry this got so long.

Comment by Jules UK on January 22, 2013 at 5:12pm

Hello Rebecca. Welcome to our group. It really has helped me enormously so I hope you will find some support here too. Everyone here knows how desperate you feel but I promise there will be "ups" as we'll as "downs". It helped too to find a reliable wig shop where they assured me that they could disguise this disease when it reached that stage. It gave me confidence that I could still look OK. Please look after yourself.
Liz, I think it would be great to arrange a get-together. I'm happy to travel.....

Comment by Liz on January 22, 2013 at 1:16pm

Hi Rebecca. Welcome to the group. You will find lots of friendly support and information here.I am 41 and was diagnosed last September. It came as quite a shock to me and I worry becuse I dont know how bad it's going to get. I believe that mine started after a very stressful period in my life. I am currently waiting to see a dermatologist in Salford which is a long way from my home but several of the ladies in this group have seen him and he seems supportive even though his doesnt have all the answers that we so wish for, like why,? And how? and how can we stop it from getting worse! I have so far lost about 1.5 inches from my hairline, all of one temple and half an eyebrow! xx

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