Comment

Comment by Simone NJ USA on March 21, 2013 at 2:16pm

Hi Alice:

Thanks for the Info..will ask my Derm for this!!! Do you put it over the entire brow area or where you see the sparse areas?
Also.,Debs..I always look forward to seeing your different looks and am inspired that you have embraced the whole 'wig thing'.....I hoping to be adventurous and brave when it's my turn...

Comment by Caro UK on March 21, 2013 at 12:52pm

I am having burning pain and bloating in my stomach since I started taking hydroxychloroquine sulphate. Worse after I've eaten. I haven't been given Planquenil, my medication is the generic form (manufactured by Blackrock Pharmaceuticals). Perhaps this is the reason? I suspect I've been given it because it is cheaper than Planquenil. I'm going back to my GP to ask for Planquenil as I read somewhere (can't remember where!) that it is easier to tolerate. Anyone else had the same side effects?

Comment by Susanne on March 21, 2013 at 9:17am

Alice, I asked my derm for Elidel - turns out the very greasy and goopy Protopic she had given me for the scalp is basically the same thing. I'm much happier with the cream, though I have to say, the first few lines of the "possible side effects" info gave me pause. Thanks for the tip. I'm staying on Plaquenil for now. Love the new hair, Debs!

Comment by Alice on March 21, 2013 at 9:09am

Simone, I've been putting a very small amount of Elidel cream over the brow area every night. I started out using it twice a day but didn't like the way it worked with my brow powder/pencil. The only side effect I have noticed is the the skin under my brows is sensitive if I get the water too hot when I wash my face. I first asked my derm about it after reading an article about a woman in Greece whose FFA was successfully treated using Elidel topically on the brows and Avodart orally. I wasn't ready to try Avodart, since it's approved only for men w/ prostate enlargement.

Comment by Chrisy, MA USA on March 21, 2013 at 8:20am

Lorn what side effects desonide gave you?? I'm using it for about 2 mo and I think it works for me.

Comment by PJ - MN, USA on March 21, 2013 at 8:10am

Debs you look great in your new picture. You look great in all the styles your trying, and you always have such a big smile on your face. Very encouraging for when that time comes for me. My Derm says to wash your hair every day to keep the follicles from clogging up. Which you don't want to happen with FFA. Shampoos/conditioners can leave residue on the scalp.

Comment by Debs on March 21, 2013 at 5:23am

I used Nizoral shampoo for a few months as that is recommend for inflammation but I have now switched to a very gentle shampoo that some people on another alopecia support website were using : Faith In Nature, Seaweed shampoo. I got it off Amazon for less that £6.00 It feel nice after I wash my hair and it does not have any paraben or sles and is fragrence/colour free. I am washing my hair less, I used to wash it every day but now a couple of times a week. I dont use any hair dye or styling products at all, just shampoo and leave it to dry naturally. I am of course wearing wigs so I don't need to style my hair. Apart from my front hair line I am not losing hair or having any thinning on any other part of my scalp, although that of course doesn't mean that I wont get that in the future.

Comment by ChrisC. Chicago, IL on March 21, 2013 at 12:31am

Hi Pam and all,
I feel just like you, Pam. . . one day I think I can manage all this, since activity around the follicles seems less "angry". Then I get relaxed for a bit. . . I just got back from Florida where I didn't think about it at all. Now today I notice my hairline at the top of my forward is red, itchy and more sparse. I was religious about applying the Minoxidil 2X daily for months and the hairloss kept progressing. So I reduced to 1X in the AM before styling my hair. I'm thinner at the top as well and I'm not convinced that it is helping. I keep it up as I'm afraid if I stop outright, then who knows what would happen. So for now I am taking Plaquenil 2X day, with Protopic at the hairline at night and Minoxidil most mornings.

I see less irritation at the temples, but the front hairline is still active. Yuck. . . my part seems OK and I had heard that FFA was just along the leading edges.

Comment by Simone NJ USA on March 20, 2013 at 11:40pm

Hi Alice:

I thought using Elidel is only for very short term use? So I'm surprised that you have been using for 6 months. Have you had any side effects and did you put the cream basically all over your brows? How how did you use the Elidel on the brows? Thanks...

Comment by PamW San Diego, CA, USA on March 20, 2013 at 9:19pm

My scalp is really pink today. Wish I knew what makes one day different from the next. Has anyone received any advice about the frequency of shampooing?

Also, I feel like most of my hair loss is now around my center part and not the temples and front hairline. Liz, when you went to Dr. Harries, did he think the Rogaine would help with this type of hair loss. Chris, did you try Rogaine (minoxidil)? Anyone else?

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