Comment

Comment by PamW San Diego, CA, USA on October 7, 2013 at 11:18pm

Annie, I felt like the Plaquenil began working as late as 9 to 12 months. I still have itchy days, but most of the burning has stopped. Also, still have a receding hairline, but it is a slow creep, rather than the dramatic disappearance I had when I was first diagnosed. Don't give up.

Comment by Annie on October 7, 2013 at 4:09pm

Hi All, I have a follow-up appointment with my derm next week. I've been taking Plaquenil for 3.5 months now. I started with 1 per day for two weeks, and have been taking it 2 x daily for 3 months. I'm also using Clobatesol at night when my tender scalp can tolerate it. I have a question for those who have been taking Plaquenil for a while now. Should I be seeing results yet? My doctor said it would take about two months, but I honestly can't tell if it's helping. My shedding is about the same, and I still have days when my scalp is extremely tender & itchy. It seems that every doctor seems to have a different idea of how long before the Plaquenil starts to work, ranging from 1 month to 6 months. Can anyone share their experience? I don't want to stop taking it too early, but I don't want to waste time before moving on to a different treatment if the current one isn't working. I think my biggest fear is that he'll tell me that there's nothing more he can do for me, and send me home with no options.

Comment by Jean on October 7, 2013 at 3:44pm

Hi everyone
Briefly, I was diagnosed with FFA about 18 months ago and have no bodily hair except eye lashes. I was kidding myself that my hairline was not receding any further and the inflammation was improving; however, having seem my specialist a few weeks ago, I've gone from three centimeters to four and a half centimeters over the last six months and the FFA is still active. I was initially really upset but then decided that I had to take back some control and having read comments on this website, took myself off to Belinda Hayle to get my eyebrows tattooed. It was almost 80 miles round trip and cost £450 but I'm delighted with the result - worth every penny (and mile). They look so natural and I don't have to worry about accidentally rubbing they off. It sounds dramatic but I feel so different about the whole FFA situation. In fact, I'm also visiting a Chinese herbalist tomorrow to see if anything can be done about my autoimmune system (I also have arthritis and psoriasis)and if he comes up with anything magical, I'll report back to the group.
Huge thanks to everyone for all the helpful suggestions and support
Very best wishes
Jean

Comment by Celia on October 4, 2013 at 9:41am

Hi Kath - I tried to send you a message but it didn't work - hope that all is well, Celia x

Comment by Celia on October 2, 2013 at 4:49pm

Hi Debs - what a journey we have all been on ! I think you saying the word 'lifeline' about sums it up really.
I look forward to next Wednesday and hope that Heidi and Liz will also be able to make it here.
Best wishes to all ! x

Comment by Debs on October 2, 2013 at 6:49am

100 ladies are now in the group.

In the summer of 2012 I felt totally alone with this condition, I found this group that Celia had just created and our numbers have grown. This is a lifeline for us all. Thank you to everyone for your support and advice. Thanks to Celia for setting the group up last year.

Comment by Celia on October 1, 2013 at 12:35pm

I meant to say that if I have forgotten anybody - sorry - please let me know !

Comment by sammi on October 1, 2013 at 12:30pm

Thanks Celia Sammi x

Comment by Celia on October 1, 2013 at 9:53am

Hello All - looking forward to seeing you on the 9th - hopefully...... Julie, Sammi, Paula, Polly, Caroline, Debs, Pam so far - please leave a message on my profile if you need directions.
Sammi, Terry - Sammi .......I will send you directions this evening for both train and car. Perhaps you could all confirm next Monday, please - that would be good. Thanks, Celia X

Comment by Debs on September 28, 2013 at 1:22pm

Carol I am so happy for you that wearing your new 'hair' is working out so well for you. I like sci-fi, i will keep an eye out for your new show.

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