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Comment by Rita - Canada on June 8, 2013 at 11:26am

Comment by Plain Jane on June 8, 2013 at 10:56am

Hi, Rita
I was diagnosed last year, too, in May. I had some diffuse thinning for years, but I believe the FFA was triggered by the stress of being diagnosed with malignant melanoma on my face. I had surgery to remove it in late 2011 - had 140 stitches down the left side of my face and a life-changing scar. As soon as I learned to recognize myself in the mirror again, my scalp became inflamed and blistered so I began seeing derms. Finally got a biopsy in May of 2012. Initially, I was put on finasteride (propecia) doxycycline, anti-malarials and Clobetasol foam. The foam only worsened the inflammation, and my derm switched me to protopic, which is an ointment and difficult to use in your hair but did seem to speed healing. The anti-malarial (hydroxychloroquine)gave me such a gut ache that I couldn't eat, so I discontinued that after 2 months. I recently stopped the finasteride because, after 10 months, it caused terrible dry eye syndrome, for which I was having to use Restasis and all sorts of eye drops. I tried discontinuing the doxy. too, but after 1 month without it, the alopecia flared up and blistered along the left temple and around, behind my ear, so I started taking it again. Now I am on a low dose of doxycycline and the pro-topic. I use ketoconazole shampoo (also an RX) to help control itching. I still have some painful sores that make it impossible for me to wear any of my wigs, so I'm wearing soft stretchy headbands from "Free People" to cover the areas of recession. (My profile pic was taken over a year ago- I have much less hair now.)For several years, I've been on a low-carb diet, but in January this year I switched to Paleo and stopped all gluten. Then in March, I stopped all dairy, all legumes, and all processed food, as well. No alcohol. No sugar or artificial sweeteners. Only organic meat and vegetables with some fruit. I have lost 15 pounds (which I wasn't trying for) but there's been no change in the alopecia. I have been taking all kinds of vitamins and supplements, but these don't seem to have made a difference either, except in my checking account balance. However, after all of this fiddling with my diet, meds. and vitamins, etc., I now have to see a hematologist on Tuesday because my white blood cell count has been steadily dropping and I now have neutropenia - so the doc is concerned I've developed another immune issue..... once you have one, you are a greater risk for having a second.
I'm so sorry I don't have better news. Maybe you will have different results.
This diagnosis is devastating. At this point, though, I am ready to stop living my life around it. I'm just tired of focusing on it. Hopefully it will "burn out" as they say.
I wish you all the best.

Comment by Celia on June 8, 2013 at 6:10am

Hello Rita - welcome to the group - so sorry you have this disease. I hope you are able to find this part of the forum to write on and read our posts too. As you can see there are now 72 members of this FFA group although many have stopped posting but perhaps they continue to read. I use the UK version of clobetasol and take vitamins as well as hydroxychloroquine although I am not a big fan of medication and don't think it's helping in fact if anything has changed I would say the diffuse hair shedding has worsened since I started that med. Try and stay positive - we all hope for a cure to be found soon. x

Comment by Heidi Short UK on June 7, 2013 at 11:15am

Hi everyone,I have just got back from Majorca it was so nice to see some sun, hopefully we're in for a good weekend!I drank far too much and put on 4lbs and hair loss was the last thing on my mind, it was great!
Hi to all our new friends that have joined us since I was last on the site, I hope you will find this as comforting as I do. Chris I was interested in the receipy you have given us, do you think it would work without the garlic, I do love it but I think my husband would divorce me if I had it every day!!
I don't know if anyone else has noticed that their skin is more sensitive to the sun. I have never had prickly heat but i suffered with it this holiday, I suppose I have no hair on my arms or legs so I suppose it is different now.

Comment by Alice on June 7, 2013 at 9:21am

Pam, When I first started using the tea tree oil shampoo & conditioner, I did not notice it to be drying. It was certainly much less harsh than the nasty Rx shampoo my derm gave me. This past winter, my hair and nails became very dry and brittle. My scalp had calmed down some by then, so I started using a thickening shampoo & conditioner for more moisture. Now, I sort of alternate between the two, using the tea tree oil when my scalp feels itchy and the other when my hair feels dry.

Comment by sammi on June 6, 2013 at 2:20pm

Just been reading the reports and case studies of theScottish dermertology hair conference FFA mentioned in many of the cases makes interesting reading though quite technical!

Comment by sammi on June 5, 2013 at 3:16pm

Hi Celia I dont intend to stop using it as it has made such a big improvment to the front part of my hair it only takes 2 mins to apply at the front of my hairline and when I compare a photo six months ago I am amazed how thicker my hair appears. I live in Altrincham nr Manchester my medical history is on my site Sammi

Comment by chris for hair on June 5, 2013 at 12:04pm

The recipe I use is a bit different than the one the client gave me, I take one lemon, two cloves of garlic, about the same amount of ginger, 1 teaspoon turmeric, one tablespoon raw honey and one chunk of jagery gur (an Indian sugar) chop it all and add water and ice. If there is enough sweetener it actually tastes good, but isn't bad with less sweetness. The Gur is an unprocessed sugar that is actually healthy and diabetics can eat it.
The original recipe says drink 1/2 cut twice a day but mine makes about three cups. The original recipe also says you can add ingredients like Aloe Vera juice. I did end up having to have a cortisone infusion, but this recipe made an amazing difference in my pain levels. Since all ingredients are anti inflammatory it should be beneficial to any autoimmune condition.

Comment by PamW San Diego, CA, USA on June 5, 2013 at 11:52am

Hi, Alice. Is the shampoo drying?

Comment by PJ - MN, USA on June 5, 2013 at 11:51am

Chris - I'm interested in your "magic tonic". Can you share the recipe/amounts of each?
Rebecca - I just started using Elidel cream about a month ago on my eyebrows (for regrowth) and along hairline (for the bumps). To early to tell of any changes. I have not heard of actually putting it in the hair though.

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