Comment

Comment by Annie on March 28, 2014 at 3:47pm

Anne, I also had a severe ear infection a few years ago.  I took two rounds of Amoxicillin, then ended up having to take Zirithromiacin to clear it up.  I've always wondered if the perhaps the infection triggered my ffa since I'd rarely been sick in my life up to that point.  Regarding antibiotics, I've always had oily skin, and have taken more rounds of antibiotics to combat acne than I can count.  I have been taking probiotics for about three months and have started making kefir, which has natural probiotics. 

Comment by Anne Louise on March 28, 2014 at 11:48am

MJ wouldn't it be great if all we had to do was take probiotics and we could cure FFA?! Ive been taking one on and off since I started Doxy a month ago. After learning more about them I plan to research some more and figure out the best one to take. As far as I can tell, there is not much harm that can come from taking probiotics and there could be a ton of benefits.

Comment by MJ on March 28, 2014 at 11:26am

Anne, that is very interesting. I had taken a bunch of rounds of antibiotics in the year before my FFA seemed to have started. I also took lots of flucanazole to prevent and treat subsequent yeast problems. One time, in the month before I really noticed my balding area, i was actually on a two week course of flucanazole, which I subsequently discovered has hair loss as a side effect. Since drastically changing my diet and reducing stress, I feel like alot of my gut problems have resolved. Interestingly, in the year before my dx I was also taking a probiotic called VSL #3 which is typically given to crohns and ulcerative colitis patients. My colorectal doc told me to take it for my intestinal issues. I stopped taking it once dx with FFA because I got leery of anything I had been taking, including my prescription nasal steroid for seasonal allergies. I just wasn't sure what might have been a trigger. I think I may reconsider the probiotic. Interestingly, the thing that seemed to resolve my bowel issues (tmi) was the slow release iron tab my derm has me on. It is so hard to know what to do...but the one thing I am grateful for is that all of this has really put me on the road to much better overall health and I feel better than I have in a long, long time!
MJ

Comment by Brenda, IL US on March 28, 2014 at 10:39am

KarenGinny.  My derm diagnosed me with FFA and LPP.  She didnt do a biopsy because she said the scarring was so evident.  I too had a bad reaction on my first try at a generic for plaquenil.  When i saw a new lupus specialist he told me to try another brand.  I had my pharmacy order the real drug and ive never had a problem with it.

Comment by Anne Louise on March 28, 2014 at 10:15am

C, I too have read that article you referenced on the efficacy of Plaquenil diminishing after 6 months. I decided to start Plaquenil this week and thankfully have had no short term side effects so far. I plan to give it a try for 6 months, possible 12.

I was at an education conference for nurses on Wednesday and learned a ton of fascinating stuff. It was all about the gut and how it impacts stress, appetite, digestion and mood. The one fact that jumped out at me was that the amount of Lactobacillus, a probiotic, is low in all patients with auto-immune disease. The speaker spoke extensively on probiotics and their benefits. She left us with over six pages of bibliography and references, so I have plenty to read up and study!

In looking back on my own health, I had a severe middle ear infection (first ever in my life) and took two rounds of antibiotics for a total of three weeks. This resulted in a yeast infection that kept returning on a monthly basis for six months. It was during this time that I began to notice my eyebrows thinning. Now I'm wondering if those antibiotics also wiped out the immunomodulating Lactobacillus, resulting in FFA.

The following is an excerpt from an article about Lactobacillus, a link to the article is after that.


Lactobacillus rhamnosus, with its antimicrobial and immune-regulating ability, along with its extremely sticky, adhesive properties, offers an entirely new therapeutic strategy for combating allergic and infectious disease. Our gut microbiota have a powerful ability to prime immune regulation.

http://www.nleducation.co.uk/resources/reviews/lactobacillus-gg-a-p...

Comment by Debs on March 28, 2014 at 3:26am

Kath, FFA affects females however there are other cicatrical alopecia that affect males too. The CARF meeting I attended in London back in Novemver was lead by 3 derms and they used photos to explain all the cicatrical alopecias. Some of the others are horrific, dreadful sores and such like, our FFA is actually the 'milder' I think having seen what the other cicatricals are like. Treatment options are the same.

Comment by Annie on March 27, 2014 at 6:41pm

Hi all, just wanted to comment on a couple of your comments.  C, I also read the study that said that Plaquenil works best in the first 6 months, but I've also read articles (including one in the last CARF newsletter) that say it can take 9-10 months to see visible results.  I've been taking it for almost 9 months and the redness has definitely subsided.  I also think the hairloss may not be quite as bad.  I still have pain, especially when the wind blows, but it's better.  I think Plaquenil works so gradually that you barely notice it. 

Mandy, my experience with pain is very much like yours.  It seems like it got much worse after my diagnosis.  Do you think it's the topical?  I stopped using mine last summer, but had to start using it again when I had a flareup. 

Comment by Kath UK on March 27, 2014 at 5:40pm

Hi Celia - a few months ago I found and read the article you were quoting from.  It seems to say that if Hydroxy doesn't work within 6 months there's no point staying on it and that was what my dermatologist told me last time I saw her (just before she said there was basically no point in me seeing her again!). 

I hate to sound negative but it looks to me as if at the moment none of the doctors anywhere know of any medication that will stop FFA.  I've stopped using any medication except for Dermovate (clobetasol lotion) which I only use occasionally now.  My hair is still disappearing and there seems to be nothing I can do except just accept it as a fact of life.

Let's hope that eventually a cure will be found - if not for us then at least for our daughters and granddaughters. 

By the way - are men never affected by FFA or only rarely?  I kind of assumed that all the members of this support group are ladies.  Am I wrong about that?

Comment by Mandy on March 27, 2014 at 5:31pm

Hi Ladies not posted anything for a while so here we go with a quick update...
March 2013 went to GP who knew straight away I had FFA gave me Betnovate to once once a day and Doxycycline to take once a day ahe knew this is what the consultants were starting with.
August 2013 saw first consultant she took me off both and gave me Dermovate, took bloods, photos etc. Saw her again in November 2013 I had stopped Dermovate as it burnt my scalp so she said to go back on Betnovate and start Hydroxychloroquine twice a day. I also food out I had a weak positive of lupus antibodies possibly due to taking Doxycycline as lupus can be drug induced!
Terrible side effects to Hydrochloroquine... When taking twice a day racing heart tremors and shaking hands and legs and mood change this led to a visit to A&E and I was advices to stop and contact my consultant but was told it could take 2 weeks to leave my body. Counsel taint said to wait 2 weeks and try agin 1 tablet a day with my evening meal. Second tell managed 10 days once agin racing heart,shakes, mood changes, anxiety and this time a rash that covered my body... Another visit to A&E and told to stop and that it could take 2 to 4 weeks to leave my body!
This was follow by 5 weeks off work due to stress and anxiety.
February 2014 - new consultant, new bloods, photos, in depth examination and give Protopic. He explained 3 ways things could go... 1 it could burn out... 2 untreated it would bubble along until at some point it would burn out... 3 treat with topical, or oral or both kinds of medication and it may slow or suppress progress until it burns out... At present no cure!
What have I learnt...
My head was not red,sore or itchy before I used medication and my hair loss was less too!
I have alway eaten healthily but I do exercise more now and I have lost weight :0)
Did I let it consume my life yes... Do I now? Sometimes... And I'm working on this.
Will I take oral medication... No never again unless it is the CURE!
Will I use topicals... Yes for a while... Thinking for the next six months
When I need to I have decide to use hair fibres and maybe a topper instead of a wig as the consultant did say the the FFA is only active at the front of my hair going back about 2 inches
Next steps... When I see the consultant next I will have the results of my biopsy... He thinks it will confirm the FFA/LP and I hope for some news regarding to lupus antibodies.
For now I intend to make the best of a bad thing... Try to stay positive and enjoy my life.
Sorry to go on lovely ladies be I know everyone like to know who different people get on with different medication xxx

Comment by KarenGinny - Iowa, US on March 27, 2014 at 5:21pm

Celia and Brenda,  I am currently taking Methotrexate 3 pills 2 times a day, once a week. I've been on it about a month and do notice my scalp is a little less itchy, but may not see real results for a while. My current derm did a biopsy and thinks I have LPP instead of FFA like my 1st derm said, but it's all very similar I believe, and most of my hair loss is in the front hairline. I had tried the plaquenil but had to stop when it gave me a rash.

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