Comment

Comment by Celia on June 8, 2013 at 5:56pm

Good evening everybody. I've just been reading posts from you. If I didn't have communications from you I would hate it. When I was first diagnosed and started this forum - I think my first plea was - something like - 'please someone talk to me' ! Thankfully it worked. There are new members joining us, steadily. Hopefully we can find a way to reduce the inflammation and so - we assume - lessen the effect of scarring and loss of the hair follicles. Jane - you are right - try to - well - not focus on it - as that's not possible - but try to focus on other things, friends,family,other interests.
I'm a retired teacher - I so miss the workplace and the pupils, however challenging, but right now - I don't have the confidence to get back in there !
On the subject of medication that we have been prescribed - please - has anyone been able to attribute any improvements in the condition, - to the use of meds ? x

Comment by sammi on June 8, 2013 at 2:39pm

Information on 7th world congress for hair research abstracts - Jour nal of investigative dermatology sorry no web address but the title will get you there! Trawl through to FFA abstracts!Sammi

Comment by Jules UK on June 8, 2013 at 11:58am

Jane, you have really been through alot! I too had a malignant melanoma removed 16 years ago but it was from my arm. I now have a 7" scar. So much has to be removed to be sure of getting all the cancer. I can well understand that the emotional shock of your treatment may have started the FFA.
Re the paleo diet, I gave it a try for 3 weeks but felt so tired that I abandoned it. I think that if blood tests show no gluten intolerance, then gluten shouldn't do any harm, perhaps.
I'm going to email Dr Harries about attending the steering group he wants to set up. Although when I hear what many of you are suffering, I feel a fraud! All I have is hairloss! I wonder whether someone with more advanced or severe symptoms might be a better candidate?
Take care, everyone. X

Comment by PamW San Diego, CA, USA on June 8, 2013 at 11:36am

alisce, what is the name of the thickening shampoo?

Comment by Rita - Canada on June 8, 2013 at 11:30am

Thanks Jane, I was hoping to hear someone had some success following the Paleo Diet (strict anti-inflammatory), perhaps someone else has tried with some level of hair restoration. I can only hope. I have enlisted my husband to follow this really restrictive diet with me. It can't hurt except for the cravings, I'm sure.

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.

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