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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.

Comment by Celia on November 7, 2013 at 4:44am

Ooooooops - blond moment ! http://youtu.be/0lLeXr9J93Q   this is the link and it's about reversing your autoimmune disorder......... x

 

Comment by Mandy on November 6, 2013 at 3:57pm

Thank you Celia x

Comment by Annie on November 6, 2013 at 1:00pm

I agree that the severity of this disease is stress-related.  My scalp was calm at my July visit with my doctor, then a death in the family caused a painful flareup in early September.  My scalp is just beginning to calm down two months later.  All the drugs in the world can't combat stress, but my doctor did say that he thought the flareup would have been much worse if I hadn't been taking Plaquenil.  He also told me to call him immediately if I have another flareup so he could prescribe short term steroids to shorten the severity and duration.

Comment by Celia on November 6, 2013 at 8:46am

Hi Mandy - just type in  Treatment for FFA, it is the 5th article and there is a box on it with blue writing on - FFA - hope you find it. x

Comment by Mandy on November 6, 2013 at 8:37am

Hi Celia, can find one that runs for about three minutes and is just a lady talking... Do you have the link? X

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