Comment

Comment by PamW San Diego, CA, USA on October 31, 2013 at 9:12pm

Hi, Karen. Good to hear from you. I have heard that some people have a bad reaction to the generic version of Plaquenil but they can tolerate the brand name version of the drug. Just a suggestion that I thought I would throw out to you.

Comment by KarenGinny - Iowa, US on October 31, 2013 at 11:42am

Hi everyone, just wanted to give an update on my latest Dr appt. My new dermatologist had gotten my old dr's records and prescribed Plaquenil to me last month. After 10 days I developed an itchy red rash all over my body and was advised to stop taking the Plaquenil, so now that is off the table for me. I saw him Tuesday and he looked through my hair and saw there is a lot of inflammation, itchy redness and flaky scalp. He did a biopsy in 2 places and I will go back in 2 weeks to get the stitches out, and hopefully get the results of the biopsy. He thinks I may have LLP rather than FFA, but to me they seem to be pretty similar. Most of my hair loss is at the forehead and temples.  I feel it has receded more this past summer and getting harder to cover up. He mentioned another med, an anti-inflammatory, but I can't remember the name. He may prescribe that later.

On the subject of injections, my previous derm gave me 4-5 rounds of steroid shots into the front of my scalp a few years ago, and I feel the hair loss got much worse after that, so it didn't help me. I like my new derm much better and he seems much more interested in getting to the bottom of this.  I'm trying to be hopeful!

Comment by Annie on October 31, 2013 at 10:31am

Dee, I have not been prescribed oral steroids by my doctor, but he did mention that I should call to schedule an appointment as soon as possible if I have a flareup or my shedding increases so he could prescribe a short-term round to get it under control as soon as possible.  

Comment by Mandy on October 31, 2013 at 9:39am

Hi Deb
I'm new to the site and to FFA but I am very interested in diet etc to you have the link to the website you mention... I have been working on my diet but would like to know more.

Comment by Debs on October 31, 2013 at 9:38am

UK BASED LADIES

 

CARF (the USA based cicatrical alopecia research foundation) are holding their 1st patient support group meeting Sat 16 November in London at the British Association of Dermatologist HQ.  (FFA is a type of cicatrical alpocia)

 

I am going to attend.  If anyone else is up for it just email to book your place:

londonsupportgroup@carfintl.org

 

 

Comment by dee on October 31, 2013 at 9:17am

Hi everyone. Am I alone in being on a regime of oral steroids ( prednisolone +Azathioprine) as well as plaquenil and steroid gel. My dermatologist is not the most communicative person and I'm concerned that I am having very unpleasant side effects with questionable results. I have lost a patch about the size of a large egg in ten months and have new inflammation creeping ever onwards. I've also prescribed myself turmeric.

I've not been offered injections .

Comment by Debs on October 31, 2013 at 9:10am

April, yes this is part of the anti-inflammatory diet advice given by Dr Andrew Weil and Dr Joel Furhman... please check  out their online websites and they list exactly what you can eat to help auto immune conditions.  I have been following this dietary advice since July, my FFA is still active but slower but my overall health is very good and I have dropped over one dress size - whilst eating more food than usual!  Also check out the Joe Cross website 'reboot with Joe Cross' he is auto immune and has basically cured his skin complaint with diet.

Comment by April on October 31, 2013 at 7:43am

Hi everyone! I was just reading this article that claims fish oil/dha has the same effect on the body as glitazone drugs like Actos. I know actos is sometimes prescribed for FFA. Does anyone take fish oil/DHA? Any success? Thanks

Comment by ElleMN, USA on October 28, 2013 at 10:28am

http://experiencelife.com/article/questionable-food-combos/

I'm a pretty healthy eater but this article was eye opening. It talks about food combining and how some combinations can lead to inflammation. This just touches the surface but I found it helpful. 

Comment by Pam on October 28, 2013 at 4:22am

I have been wondering about injections too. I am going to see Dr Harries next week (shame its not the same time as you Celia - we could have done Trafford therapy together!  My husband is not so keen to accompany me to that!!). Seriously, I am very interested in hearing how you get on, and any other tips for me about different treatments that I should discuss with him that I have not already tried.

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