Alopecia World
www.alopeciaworld.com
How long does regression typically take? And any natural remedies found to work at all?
Hi - I am new to this site and unfortunately newly diagnosed with FFA. My once thick, rarely plucked, eyebrows began thinning about 2 years ago. I was REALLY freaking out a first, going to 4 different dermatologist and a Holistic Practice trying to find out why and how to stop it. I tried injections once and countless creams (licoid, desonate, clairfoam, etc.) Eventually I noticed it would cycle with dryness, fall out, then regrow - although not to original, but I learned to deal and would just fill in with eye shadow when needed.
However, about 6 months ago I noticed that my hair line was thinning. Particularly on the sides at first, now the top. I mentioned it to a new dermatologist I was seeing at the practice I was going to and she seemed very interested, saying she suspected FFA , told me how rare it is and that I was like the 4th person around my age (40) that she saw with it recently. She recommended I see Dr. Jerry Shapiro in NYC or Dr. Amy Pappert, NJ. I made an appointment with both.
Dr. Shapiro's appointment was first (@$800 and he doesn't take insurance)but I was glad I went. He did some measurements of my hair line and said it was between the normal limits and also measured how many hairs I have per square cm and the hair shaft diameter. He said that I had miniaturization but my other measurements were within the normal limits. He actually did not think I had FFA but rather androgenetic hair loss. I was of course happier with this result. He prescribed 50mg Spironolactone, Minoxidil 5%, Nizoral shampoo for my hair (and face and brows - think that did help with dryness in my brows). However, I was too scared to take the Spironolactone after reading the pamphlet and I did the Minoxidil reluctantly for about a month but got panicked when I saw all the shedding and the increase of shed from my brows and even eye lashes, and my ears were red and irritated so I went off. Dr. Shapiro said I could have been allergic for the ear reaction. And another doctor said it wouldn't help for this type of alopecia anyway.
I then had my appointment a month or later with Dr. Pappert and she suspected FFA and was surprised Dr. Shapiro did not (apparently he is an expert in this field) so she recommended a biopsy, which I did and confirmed it was FFA. In the couple of weeks since the biopsy I notice a difference on my hairline and wonder if it could have sparked more loss. She recommends Pacquenil (400) and Cellcept (sp?)and thinks the Cellcept would be better for me. The problem is I am kinda an organic non GMO type of person and the thought of taking something that can make me blind or give me disease that can kill me, is not a risk I think I can take. Maybe I will feel differently as this gets worse - dunno. Dr. Pappert was great, so asked the doctor in the room with us to look into any medical literature on more natural remedies, said we could start with a topical cream (although she wasn't optimistic) and we could do shots (but again, she didn't see that working much - and from posts, I'm afraid of that as well). So I am going back in a couple of weeks to meet with another head doctors that apparently comes to town every couple of weeks and meets with all the doctors there so they will have me meet with them to.
On my own research, I am trying this Paleo Autoimmune diet (which I am not too happy about but I'll try my best - any body do this and know how hard core you have to be?). I will also be going back to the Holistic practice I go to from time to time and get her thoughts. My iron, D and testosterone are all low as well. I am wondering if anything to increase the testosterone would be helpful - I ordered some organic borage oil that I read may help. I also ordered some organic tumeric and some JustNatural organic hair loss shampoo and conditioner.
Oh - and I have been using Latisse - recommended by one of the early Derms I went to see but didn't start until about a month ago. I was putting on my eyebrows (but around the time the minoxidil shed hit, so hard to tell true results) and also started putting on my hairline. I actually think it may be helping. I do see regrowth but the hairs are super fine. Now, I also notice more thinning, so hard to say if its causing that or the re-growth or what I have to hang on...
Tomorrow, I go back to Dr. Shapiro, so I will bring the biopsy report and see what he recommends. I am trying my best to remain calm about this. My husband has been great, saying he doesn't care, will shave his brows and head too but who knows how he will feel when it really happens. One big fear is that my kids will be embarrassed and feel different about me one day although my bigger fear is to take something that will take me away from them.
So that's my story. With the thought I may not do anything major to stop this, I wonder how long the regression of hair line typically takes and if anyone has had success with any natural remedies?
Sorry this is so long. Good luck to everyone. What a crappy thing to deal with. I certainly did not see this one coming :(
Replies to This Discussion
-
Permalink Reply by Debs on
-
Hello Michelle, thank you so much for your last post. I have been wearing 'hair' since last September, I had not realised but it is my 1 year anniversary too. I started wearing it pretty much full time in the New Year and it now is just part of my normal routine in the morning like brusing my teeth.... I love essential oils and am using turmeric and lavender essential oils in marual oil on my scalp. It feels really nice, I like the smell and I would rather put that on than the steriod lotion my derms have given me. Can I ask please what oils you are using? I am very happy for you that your faith is helping you cope with this FFA. I am virtually back to normal now and am enjoying life the same as before my diagnosis in December 2011. It does take time though for use to heal emotionally from this condition. XXX
-
-
Permalink Reply by Sam on
-
Thanks So much Michele! I can't totally understand your thought process of not chancing side effects. I did the shots just this week and will look into that further before continuing. I will probably forgo any oral meds and hope since its early for me, maybe shots briefly will be enough to stop it. Although I may be naive. In the meantime, I ordered a wig and a bunch of headbands. I actually wore a wig out last night for fun. Besides the itchiness, I actually liked it and could see that changing up styles may be fun.. Just looking on the bright side. In any event, glad to hear that you are back to enjoying life with your new hair! I am going to
try my best and not let this take over. Reading everyone's stories and suggestions is very helpful. Thanks!! -
-
Permalink Reply by Michjo57 on
-
One of the side-effects of the Griseofulvin is liver damage. I was afraid of those particular meds. I just didn't want to have to get my liver enzymes checked all the time. I think if I were younger though I would have tried anything. You will get used to the wigs. Wigs.com has videos on the some of the styles too. It is definitely a learning process. I think the hand tied, monotop, lace fronts are the way to go. More expensive, but definitely worth it. Let me know how the shots do for you. My derm tried them once, then said they did not help. I think hair loss is so common, and most doctors don't know how to treat it. Did you have a biopsy, if so what was the diagnosis?
The last doctor I saw at the University of Denver, who actually diagnosed the FFA, recommended Griseofulvin, which you have to monitor liver enzymes and doxycycline. I used doxy at the beginning of all this because the back of my head itched so bad. I went off about 3 months later when the itching stopped. The last time I went he said a new study out from Duke university recommended Spiro and Avodart for FFA. Avodart is for males to block androgens. That makes sense to me since increase testosterone can cause hair loss. I am using that once a week now with the spiro. I used to take spiro for severe acne, and it helped immensely. I think all this is related to your immune system and adrenal glands. I went to a naturopath also. He said to do probiotics to keep your gut healthy. I guess all your immune system is located in your stomach.
Sorry I am rattling on, but the more info you have the better off you can make informed decisions down the road. I hope we all find something that works, the only way we will know is to keep communicating like this. The doctor at the Univ in Denver also said they are researching stem cells for hair loss. That will probably be the one that will cure hair loss, in my opinion.
-
-
Permalink Reply by April on
-
Sam,
I been reading about aloe vera and its inflammatory properties as well as its effect on hair growth. Some people on this site have been using it for other types of alopecia. I have been applying the gel straight from the plant to my scalp. Can't hurt right? I've also read some positive things about capsaicin for hair loss and decreasing inflammation. I have hadn't prescription for clobetasol for a few days but I haven't had the nerve to try it...you could perhaps look at receiving xtrac laser therapy. It is a uv light therapy that may be effective. I had 10 treatments. Not sure if I can conclusively say they helped or not but I may go back on them. There are little to no adverse side effects fromthe treatment. Just thought I'd pass this Ali g. Hope you are doing well! -
-
-
Thanks April. I will look into this. I was just away for 5 days and forgot my vitamins and totally noticed an increase in shedding! I am anxious to see if I notice a reduction once I start them up again. I am taking, biotin -5000, D 2000, iron, fish oil, and Tumeric (one that has ginger in it). I have the clobetesal as well but not using bc my doc said it can cause veins on your face to pop out. I will ask about the laser treatment tomorrow. I am going to one of my docs (I have 2 I am seeing regularly now, figure the more the better) and apparently there is a head doc in tomorrow they are bringing me in to see. I will also get an Aloe plant and check out the supplement you recommend. Thanks again! Good luck to you as well.
-
- ‹ Previous
- 1
- 2
- Next ›
© 2024 Created by Alopecia World.
Powered by
