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Comment by Judy on January 6, 2013 at 9:31pm

Pam, thanks! Actually I think my hair loss has slowed also and I think I have several new hairs sprouting on eyebrows - possible?? Maybe it is this COLD weather? I will let you know if anything interesting at apt tomorrow.

Comment by PamW San Diego, CA, USA on January 3, 2013 at 10:37am

Hi, Judy! Good luck at the derm next week. You may want to ask about Zyrtec for itching. I too have the red rash in between my eyebrows and I assumed it was because the hair follicles were inflammed. I have been on Actos for one month. I still have itchy days, but nothing like it was before. I also think my hair loss has slowed down. days where hair lost is normal and just a few days of crazy hair loss.

Comment by Judy on January 3, 2013 at 1:11am

Hi everyone and Happy New Year!! I have been out of touch for several weeks and enjoyed reading all the interesting posts. I have my 2nd appointment with dermatologist Monday and have so many questions this time.
I, too, was initially scared to take the Plaque(Hydroxycloriquine) but learned much more, from this site and from doctors.. I had an appointment with eye doctor this week and he said that eye problems rarely are seen until very long use. Hope we all won't be on it forever!!! He gave me a chart/grid that I am supposed to look at every day to make sure the lines are straight, not wavy.
One of the questions I have for the dermatologist is about the
autoimmune disease part - what do they know. I have a feeling that
stress is a big factor, at least for me. Anyone else?
Also curious about the red spot/rash between the eyebrows. I know a few of you also have that.

Celia, I feel for you with the septic. I have one, a very old one, also and it is a huge fear that the darn thing will flood.
Good luck.
Pam and Lacy - I am in San Diego for only a week. But I plan to be back in mid February - look forward to meeting w/you.

Comment by Judy on January 3, 2013 at 12:50am

Comment by PamW San Diego, CA, USA on January 2, 2013 at 1:55pm

Hi, PJ. You need to be careful about selecting a permanent makeup artist. I would ask your dermatologist for a recommendation. They all know the best people to use. If not your derm, then ask friends, but you definitely want to go with a personal recommendation.

Comment by Jules UK on January 2, 2013 at 1:55pm

Hi PJ, welcome to the group. It's good to know that some research could be going ahead. I'd love to participat but the UK is a bit far! I'm planning to have eyebrow tattoos done soon. From what I've seen, you certainly get what you pay for - I've seen some terrible results. So I'm going to use a wig shop that specialises in customers with alopecia / undergoing chemo. The cost is high - £400ish, but hopefully worth it. I think if you use a reputable place, you should be OK re safety / cleanliness / results. Ask to see photos of previous work perhaps.

Comment by PJ - MN, USA on January 2, 2013 at 1:34pm

When I search that it just comes up with a wikipedia looking site and there's alot of Liz Colemans on facebook. Sorry I keep posting but I have so many questions. I've seen some comments on getting eyebrow tattoos. How do you go about looking for someone to do that? Tattoo shop? Any negatives to doing that? Safety, etc.

Comment by KarenGinny - Iowa, US on January 2, 2013 at 11:46am

PJ, there is a group on Facebook called "Frontal Fibrosing Alopecia" that was created by Liz Coleman. You have to request to be a member I believe. There are quite a few postings on it. Also I live in Iowa and would participate in a study if there is one. It would be nice to see if there are more factors we all have in common.

Comment by PJ - MN, USA on January 2, 2013 at 11:45am

Just went back and looked at some notes from my apts. I think the study on FFA at the U of MN has been approved, but had to go through a reviewal process. So not sure how long that will take. Also has anyone gotten a SKIN allergy test done? I have had the typical allergy test done but not one specifically for skin.

Comment by PJ - MN, USA on January 2, 2013 at 11:11am

I am new to this group and haven't been able to read through everything yet with the holidays, etc. I'm hesitant to put much on here since anyone who goes on this website can see what your writing. I did want to let everyone know that the University of Minnesota Derm Dept is trying to get a study going on FFA. They apparently see quite a few patients there including me. I will let my Dr know of this website and let you know when I hear more about the study. It will be by invite only that you can join. It may be a couple years down the road. I thought it would be interesting to start a page with just a list of questions that we would all like to ask each other. This might help to find our common link and help when a study does come along. I know I have alot of questions I'd like to ask to see if we have anything in common. Like - exposure to pesticides/herbicides.

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