Comment

Comment by Debs on January 17, 2013 at 8:49am

Pam, your compliment is very much appreciated. Your doctor clearly is very informed about the long term use of Plaquenil. It is a huge relief to know that we can use if long term if needs be. I feel much more positive this year about my FFA and am not obsessing on it as I have in the past 12 months since first noticing my hair loss.

Hello to you Robyn - lovely to have your input.

Comment by Robyn, Melb. Australia on January 17, 2013 at 12:01am

Oops - Wasn't sure where to respond and looks like I hit add comment too quick! Thanks so much Pam for responding so quickly. It looks like this condition is a 'waiting game' and I will have to be patient. I like to be prepared for what is to come (like a few others it seems), so I will continue to do research and try to keep up to date. Thankfully I haven't had the 'itching & burning' and didn't need to use the Clobetasol (which my specialist had prescribed initially). Of course I don't presume to think that may not happen!
I have also had reality checks with family who have faced far worse situations - so I try to keep things in perspective which I have to say does help cope at times.
Many thanks once again. I look forward to keeping in touch with the group.

Comment by Robyn, Melb. Australia on January 16, 2013 at 11:55pm

Comment by PamW San Diego, CA, USA on January 16, 2013 at 10:38pm

Hi, Robyn. Welcome to our merry little club. I am pretty sure that most of us have been recently diagnosed within the last year or two so we really don't have long term experience with Plaquenil. Coincidentally, I had an appointment with my regular dermatologist today. I see two doctors - one regularly and one is a "specialist" at UCSD (University of California San Diego). My regular doctor knows just as much as the specialist -- but she has never treated anyone with this condition. I asked her tonight about how long you can be take Plaquenil and she said it is safe to take for years. Many patients with Lupus take Plaquenil and she said as long as your liver panels are checked periodically, you can stay on the drug for a while. This is good, because our disease is a long term affair. She said I will probably deal with it for at least the next 10 years. I have to get used to the idea that I have a chronic illness. She thinks my hair loss is progressing slowly. She wants me to stay on Actos for a few more months and continue with Plaquenil and Clobetasol for the itching and burning.

Anyway, don't be shy. Just chime in -- we have all ranted and raved about how we feel. Within the last two days I have had some pretty awful news about the health of friends much younger than myself and with young children. I feel ashamed of myself sometimes when I think about how I obsess over my hair.

Anyway, Debs - I wanted to tell you that the reason why you look so beautiful in your wigs is because you are beautiful.

Comment by Judy on January 13, 2013 at 8:58pm

And mine had the white flakes before I was diagnosed. I was putting baby oil on it. My redness was along the forehead and temple at the hairline, tiny red bumps. Now it is white. From the sound of these posts it seems the clobesol helps or eliminates the irritation.

Comment by PamW San Diego, CA, USA on January 13, 2013 at 1:58pm

Crazy disease.

Comment by Debs on January 13, 2013 at 1:11pm

Hi Pam, I don't have any white flakes. My scalp doesn't feel any different than before I had FFA. I have the dermovate lotion, I am not using it simply because I have not got any reddness or visible iritation. My hair however is continuing to receed.

Comment by KarenGinny - Iowa, US on January 13, 2013 at 12:29pm

PamW - I thought I would comment on the red scalp issues, My scalp has times when it's relatively normal but right now in winter it is really dry and flaky and a little itchy - like dandruff. The front bare parts of my scalp are white and not irritated - only irritation is on the part with hair. When my hair loss first started 1 1/2 years ago it was more irritated and very itchy - that's when I first saw my dermatologist and was prescribed the Clobetasol. I haven't used that in a while and usually use T-gel shampoo to control the itchiness and flaking. I'm not on any other meds since my doc didn't recommend anything as most of my hair loss was already done. If it gets worse I will go back to the clobetasol.

Comment by PamW San Diego, CA, USA on January 13, 2013 at 11:37am

When I first went to the doctor, she took a boat load of tests. Everything checked out, but I am scheduled to go back this week and I am going to ask. Was the redness on your bald areas? my redness is in the center part of my scalp. Bald areas are white. Also, does anyone have white flakes?

Comment by Judy on January 13, 2013 at 12:24am

I have been using it every 2-3 days on all the "bare" areas but that is a question I need to ask her by email. Forgot at appointment. Originally she said to use every day or every other day - that was when it was so red.
Pam, have you had your blood checked? She sent me for 2 tests that my regular doctor hasn't done. Also she was questioning that my protein level was low and iron near low mark. Both are important to be near to normal.

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