Comment

Comment by PamW San Diego, CA, USA on July 17, 2013 at 2:53pm

Hi, Jules. My derm said to be careful with the clobetasol because it could cause your skin to get thin - could this be what you are experiencing?

Simone, I see my dermatologist every 6 to 8 weeks and the eye specialist once a year.

Thank you Debs for representing us.

I have a question about Rogaine: Did Dr. Harries recommend this? has he seen improvement with it?

Comment by Simone NJ USA on July 17, 2013 at 2:47pm

Hi Ladies...for those on Plaquenil...how often did your Derm recommend for followup visits?

Thanks...x

Comment by Jules UK on July 17, 2013 at 2:33pm

I think it does vary from Trust to Trust, sadly! I couldn't have it on the NHS. I did ask. X

Comment by Liz on July 17, 2013 at 2:02pm

Hi Jules. I got my Regaine prescribed on a normal prescription. Do gps have different rules depending on where you live? x

Comment by Jules UK on July 17, 2013 at 1:23pm

Hi everyone, re Dr Harries steering group, I've asked Debs if she'd be our rep instead of me and she's kindly agreed. She has been a reliable, invaluable presence on this forum who has done so much research on our behalf that I thought she was the natural choice. So good luck, Debs, and thank you!
Another matter - I asked my GP for a private prescription for Regaine foam and it cost £88 for 6 months supply. In Boots, they said that was almost half price. I asked for the 5% concentration.
Also, my GP said that I seemed to have lost some subcutaneous fat from the sides of my face near the hairloss, forming hollows. He thought it might be connected with FFA. Anyone else notice something similar? It'll save me sucking in my cheeks for that Marlene Dietrich look!
Xx

Comment by Annie on July 15, 2013 at 4:31pm

Carol, I also had some sleep issues with the Plaquenil at first. I had trouble falling asleep, then would wake up every hour. I was also having very strange dreams when I did manage to get some sleep. I stopped drinking any caffeine in the afternoon and started taking my 2nd pill earlier in the day. My sleep pattern is gradually getting better. I've been taking it for almost four weeks, and it has relieved most of my itching, so I'll keep taking it if possible.

Comment by Donna on July 15, 2013 at 2:57pm

I looked up and I first got my eyebrows done on 2005. By then I had virtually no brows left. I had not yet realized my hairline was receding too. I look back at old picture to try and determine when it became noticeble. Even when I realized it I didn't kmow it was a condition with a name and something I should see a dr about. My sister and a first cousin on my dad's side has it too so seems to be some genetics link. There could certainly be a connection to high stress and I am in that space again now and concerned I might lose more. If you check my posting history by clicking on my name I give info about autoimmune and gluten-free. I had marked a paper to measure where I was at to know if it was progressing. I lost the paper! So maybe divine interference to keep me from stressing about it. I can still style my hair ok but the slightest breeze and I am exposed. If I lose much more I will have to look at hair toppers or wigs. I have only used clobetsol for treatment for the last 4 months and the derm said inflamation was better. I used nothing prior to that other than I take lots of supplements and added Hair Essentials by Natural WellBeing which has the nutriens for healthy thicker hair. Although it of course doesn't cause regrowth I think the hair I have is thicker which helps with styling and may slow down loss. I also use nioxin shampoo and conditioner which apparently makes each indivual hair thicker so makes hair appear thicker. I think this site has been very supportive and wish there was away to survey each member with a serious of questions and find out more about what we all have in common. I think there are computer programs that could do this. Does anyone know? Neither I nor my sister have pain or significant itching as some report so lucky there.

Comment by Annie on July 15, 2013 at 10:14am

Regarding the sweating, I remember running across something on the internet that referred to FFA as sweating alopecia. It must be a fairly common symptom. So far, I've only had the sweating when I started using topical steroids on my scalp (other than the occasional normal hot flashes associated with menopause).

Comment by Sheri Conway on July 15, 2013 at 5:31am

sorry, first time leaving a comment. Apparently :( I need computer101 lol to figure it out. Debs :)HI, I know your in the U.K., but how did you locate a semi-permenant makeup artist? I've googled eyebrow tattoo, but my gosh, some of those pics are scarier than what I'm already seeing in the mirror. Thank you

Comment by Sheri Conway on July 15, 2013 at 5:19am

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