Comment

Comment by Maddy, California, U.S. on November 12, 2013 at 4:14pm

I think the triggers for this disease are different for everyone. For me, the flu shot always makes me have a big hair shed. I had Influenza, BAD, in 2006...and afterwards, started to notice a bit of thinning around my temples. The next year, I decided to get my first flu shot (2007), and that was my first MAJOR hair shed...lost most of the hair from my right temple. Then, nothing for a year. The following year, 2008, got another flu shot and lost most of the hair from my left temple area and the rest of my right...then nothing for the rest of that year. I got one final flu shot in 2009, and that is when I started noticing a lot of thinning around the top of my hairline. I have not had a flu shot since on the recommendation of my endocrinologist. She believes that is my trigger...or, at least, one of them. I am going to see an immunologist in a few weeks to discuss this with him...and also to find out about the Shingles vaccine. I'd like to get it, but am so scared that I will have no hair left.  Ugh. Again, I think this all varies from person to person though.

Comment by Polly UK on November 12, 2013 at 3:30pm

I had my flu jab a few weeks ago because of asthma and heart problems. My derm said it was more important this year as Hydroxychloroquine is a mild immunosuppressant. He also said that it's live vaccines to be wary of and the flu vaccine is not live.

Comment by Alice on November 12, 2013 at 3:03pm

I have had pneumonia in the past. so always get a flu shot.  My thinking is that I'd rather give my immune something "real" to fight, instead of my hair. 

Comment by sammi on November 12, 2013 at 2:38pm

Does anyone know if it is okay to have flu injection I usually have it every year but I'm worried it may compromise my immune system? I wondered if anyone has mentioned to their derm. as I did read something a long time ago regarding side effects?! best wished Sammi

Comment by christiekd on November 8, 2013 at 5:39pm

Hi All!  I watched the Youtube video about autoimmune disorders and digestive issues - leaky gut syndrome.  I have been diagnosed with IBS and have had pretty bad digestive issues for some time.  I have been toying with changing my diet, but haven't done it yet because it seems too difficult right now since I have a husband and 3 kids.  Preparing separate meals for myself always seemed a bit daunting.  However, after doing some research on "leaky gut", I think I am going to give my diet a much needed overhaul.  I just read the book "Digestive Health with REAL Food" by Agalee Jacob.  It does an amazing job of explaining all sorts of digestive issues and the link with autoimmune disorders.  So, here we go.  Will let you know how it goes.  It would be nice to feel better and help both my issues - digestive and FFA.  I'll keep you posted. 

Comment by Annie on November 8, 2013 at 2:02pm

Hi All,

I'm wondering if anyone has had the same experience as I'm having.  I was having trouble with Clobetesol irritating my scalp, so my doctor switched me to Bethamethasone topical 2 times daily.  I have been using it for three weeks, and the redness on my scalp has almost completely disappeared.  I don't know if it's the new topical that made the difference or if the plaquenil I've been taking for 4 months is finally starting to work.  My problem is that even though my scalp looks much better, it's still very tender when I style my hair or the wind blows it around.  I guess I expected that when I got the redness under control, the pain would subside.   Can anyone tell me at what point my scalp should stop being painful? 

Comment by Paula uk on November 8, 2013 at 7:19am

HI ALL,
saw Dr Fenton, he felt that my hairloss has been minimal since June and the inflammation has reduced significantly.
My meds from June had been a 40 day course of Prednisolone reducing
Hydrochloriquinne one tablet daily
Etrivex foam shampoo daily
Elocon cream and scalp lotion on inflammation daily.
Two Ferrograd C iron tablets daily.
I didn't take any other supplements and followed the med. reigime
Diligently.

So now he suggests
Hydrochloriquinne one tablet twice daily,
Etrivex foam shampoo only when required on any itchiness / inflammation area the same with the Elocon cream and scalp lotion.
My ferritin levels increased from 60 up to 160 so I can stop taking iron tablets but keep an eye on ferritin level not below 100.
He has prescribed Prednisolone in pulse doses so I take 25mg for three days then break for two weeks then another 25 mg for three days repeat for 4 sessions.He is hoping the steroids will get rid of the last slight inflammation.
I am hoping that the hydrochloriquinne is working for me as he felt that there was no new hairloss areas from FFA/LPP.Fingers crossed I'm almost scared to say this out loud just incase it turns out that I spoke too soon!
Best Wishes x

Comment by Ann on November 7, 2013 at 8:42pm

Hello Everyone,   I saw a new dermatologist last night.  Thankfully, she trained with an expert on scarring alopecia, so she was extremely informative.  However, she told me after looking at my scalp that I have both FFA and LPP.  Of course I do.  Doesn't that beat all!   I explained that in September my scalp became extremely inflamed and when it finally calmed down I had lost patches of hair.  She told me to call her immediately if that happens again so that she can do injections to reduce the inflammation as quickly as possible. 

So, I just restarted hydroxychloroquine, she gave me injections last night, and I continue to use clobetasol solution and shampoo.

I am attending a seminar on Sunday.  Will let you all know if I learn any more than we already know.

ann

Comment by Mandy on November 7, 2013 at 3:58pm

I have read so many things in the group and I can only say who amazing you all are... Sharing stories, feeling, thoughts and treatments... All of this has helped me put things into prospective... Feeling stronger now... Know I will have my bad days but I have a great family and friends and now the group to help me through the tough times :0)
Celia, I have watched the link... Very interesting! I have been doing some research into autoimmune disorders and leaky gut... Made some changes to my diet and trying some different supplements... Will keep you posted.
On the bright side have lost 10 pounds and everyone is telling I look great and my skin has a glow lol x

Comment by Caro UK on November 7, 2013 at 7:54am

Polly, you went through an awful time with a combination of events and serious ill health on top of it all. As you rightly say, the stress you suffered during those years seems likely to have been the trigger for developing FFA.  Thank you for sharing this with us. I'm glad you've been able to come out of that dark period in your life and enjoy life once again. This disease definitely seems to be related to stress, and also linked with ill health when the immune system becomes damaged.

Some years ago I developed IBS and was prescribed medication to alleviate the symptoms.  At the time my GP did not give me any dietary advice but I am definitely gluten intolerant as I have a flare up if I eat anything containing gluten. If I pay attention to my diet I do not need to take any medication.

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