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Comment by Ann on November 2, 2013 at 2:00pm

Hello.   Just reading comments concerning fish oil.  I'm trying to follow the autoimmune protocol by Dr. Furhman.  Also joined his member center and asked advice regarding FFA.   One of the doctors responded advising fish oil due to PPAR agonist properties - similar to diabetic drugs.   don't understand the science, but thought it was worth a try.  When I asked how much,  the answer I got was 2,000-3,000 mg of EPA - to try it for 3 months to see if it makes a difference.  If not, to discontinue.  

I had to stop taking hydroxychloroquine because I was getting frequent migraines.  Been off about 3.5 weeks and still getting migraines.  Saw my GP yesterday and we agreed it wasn't the hydroxychloroquine so I will see if I can get back on it and give that a try.

 

Comment by Mandy on November 2, 2013 at 11:48am

Thanks Deb I will check them out x

Comment by christiekd on November 2, 2013 at 8:24am

Hi Debs, I, too, had injections 2 times 2 years apart.  Both times my head dented and both times it has returned to normal.  Also, be careful with the doxycycline as it can be hard on your stomach.  Make sure to take it with food, and you might want to consider taking a probiotic at the same time because along with the bad bactieria, it also kills the good bacteria in your stomach.  I had a lot of stomach aches with it and found it somewhat hard to take.  That's why I switched to minocycline which worked just as well for me as doxy, but seemed to be easier on my stomach.  However, I have digestive issues as well so maybe it was just me. :-) 

Comment by Debs on November 2, 2013 at 4:17am

Mandy, check out www.drfurhman.com  www.drweil.com  www.rebootwithjoe.com

Comment by Debs on November 2, 2013 at 4:08am

Hi Ladies, saw my derm yesterday.  Been taking plaquenil twice a day for 8 months.  Hair loss has slowed to about half what it was before but still active.  Derm has now added doxycline twice a day in addition to the plaquenil.  I go back in 6 months. 

Steriod injections:  discussed using them, I asked questions about the dents they can cause.  Derm said dents caused if injections not done properly.  I asked if they go away with time.... answer is NO, dents are permenant... I have decided not to risk further disfigurement to my scalp.

Have a good weekend.

 

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

 

 

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