Comment

Comment by PamW San Diego, CA, USA on August 27, 2013 at 7:36pm

My experience with Plaquenil is that I really noticed less itching at about 9 months to a year. I just passed my one year anniversary and the itching and burning have definitely improved. My dermatologist said that I had redness around the nape of my neck and behind my ears because I used clobetasol too often and for too long. She only wants me to use it every other day and not on weekends. She said you need time off from it or it can harm your skin.

If I am really itchy and can't use the clobetasol, I will use Paul Mitchell's tea tree oil and conditioner which helps. It is very drying, so don't use it too often.

Wishing you all well.

Comment by Brenda, IL US on August 27, 2013 at 4:20pm

Annie, the first dermatologist i saw last year put me on Clobex first and i developed a red rash where i had applied it. Then she prescribed Luxig and the rash worsened. The first time i visited her she thought i had FFA then she changed her mind. She recommended Free and Clear shampoo and conditioner and womens rogaine once a day. I returned in six weeks and she was sure my hair was coming back. She thought the hair loss had been due to lupus. Then i stopped the rogaine in january and my hair has fallen out horribly. The derm. that i saw this summer said i have FFA. I started the plaquenil for my lupus in Dec. 2011, i think, and at first i thought it was causing my hair to come out as that can be a side affect. Don't know who or what to believe. I just want the itching to stop and my hair to sop falling out. :)

Comment by Annie on August 27, 2013 at 2:02pm

Brenda, sometimes we just need need to vent. It's not like we can compare symptoms with the neighbor across the street from us. I'm trying so hard to be hopeful. I honestly feel like a positive attitude helps the healing process. I never had any symptoms except hair loss until after my diagnosis in March--no pain, redness, itching, or red bumps. I thought my receding hairline was just part of the menopause process. Since my diagnosis the scalp around my face has gotten itchy and so painful that I can barely stand to go outside on a windy day. I wonder if it's the alcohol in the Rogaine and Clobetesol causing the discomfort, but I'm scared to death to stop using them. My doctor seems puzzled since my scalp always looks fine

Comment by Brenda, IL US on August 27, 2013 at 1:13pm

Annie I'm having a rough day too. I've been on plaquenil for almost two years. Something was working last fall. Don't know if it was rogaine or plaquenil. This spring and summer i've had more hair loss than ever. I had red blotchy places on the sides and those are gone. Never experienced itching at top hairline (that i can remember) til this summer. I shouldn't have stopped the rogaine in January. I'm done griping. Sorry I'm no help.

Comment by Annie on August 27, 2013 at 1:02pm

Hi all,some days are harder than others, aren't they? I was just sitting at my desk at work & scratched an itch over my right ear only to see five hairs fall from the same area. I honestly felt like crying. I started Plaquenil June 22 and keep searching for signs that it's working. My doctor said I should start seeing results after about two months. Can anyone who's had success with Plaquenil share how long it took to see she shedding start to slow down?

Comment by Brenda, IL US on August 27, 2013 at 12:55pm

Thanks Maddy. I just can't afford a trip to CA. I'll have to find someone closer. Looking forward to seeing pics if you put them on. That's something i don't know how to do.

Comment by Maddy, California, U.S. on August 27, 2013 at 9:42am

Hi Chrisy, The cost for the two hair pieces was $1500, so about $750 each. I won't wear them all the time, so I think they will last for a long time. No, you do not need extra headbands or anything to keep them in place. They have tiny hair combs attached around the "cap" area that fit into your own hair and then snap down. They are very secure when on...even in the windiest conditions. The cap area is only a small band and then there is mesh in the middle with the real hair sown on...so it's not at all hot (which I was wondering about), which surprised me. Once I get them on Thursday, maybe I can take some photos and somehow share them on here. I'll try to figure that out.

Comment by Debs on August 27, 2013 at 5:32am

Polly... hello and welcome to our group. I am so pleased you have found us so early on in your journey with FFA...XXX

Liz, no I dont have headaches with any of my wigs. I don't wear a wig cap as they tend to be quite tight and I think would definately give me heaches if I wore them. The owner and stylist of my local wig salon in fact advised me to start off wearing wigs without wig caps... she showed me how to pin my own hair up using hair grips (bobby pins), I now have cut my own hair shorter so I don't need to pin it up. I just put my wig directly on my head. I would also try loosening up the 2 straps inside the wig at the back hairline... experiment to see how tight it needs to be to feel secure. Liz, the wig is not pressing on a nerve, however you may have it pulled too far forwards - a common mistake to begin with - put your hand sideways on starting at your eyebrows... the wig should begin 4 fingers up from you eyebrows... if it is placed so your wig hairline starts 4 fingers up from your eyebrows it will not be pressing on anything to give headaches. XXX

Comment by Chrisy, MA USA on August 27, 2013 at 12:01am

Hi Maddy, may I ask how much it costs? I'm sure is much more than the ready ones. Also, how good it blends with your own hair and if you need extra support like headbands to make sure it stays in place. Thank you!

Comment by Maddy, California, U.S. on August 26, 2013 at 9:38pm

Hi Brenda, I had them made by a lady in Costa Mesa, CA, who worked for 25 years at a wig/hairpiece salon in Newport Beach, CA. She was recommended to me by a close friend who went through chemo and had several pieces made by her. The hairpieces are made of real hair. She finds your exact color and texture and then makes the headpieces. It "snaps" on to the top of your head, so, yes, the sides are also covered. If you want actual hair right next to your ears (like a strip), she can add them. I did not do that. These headpieces add more hair to the sides and front and then taper off in the back. It all blends in with your own hair. Anyway, if you would like her information, just let me know and I can email it to you.

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