Comment

Comment by PamW San Diego, CA, USA on April 16, 2013 at 6:39pm

Deb, good luck at your doctor's appointment. Could you please ask about what comes after Plaquenil? What is his recommendation if you are still experiencing burn, itching and hair loss after 9 months on Plaquenil? Also, could he explain why some days we feel comfortable and the next day we feel miserable? Celia and I are more comfortable in the morning, and as the day wears on, our discomfort increases. Does he know why? Thank you for your willingness to ask our questions.

Comment by Simone NJ USA on April 16, 2013 at 11:54am

Debs: thanks for the info... I'm still somewhat confused as I have a bit of inflammation on the back of my scalp and FFA is supposed to affect only the temple & hairline. From what you are saying, wherever the itching and inflammation occurs I will lose hair at that location at some point?

Comment by Debs on April 16, 2013 at 3:27am

Celia, the 15th would be the best day for me... but I can make the other dates.

Comment by Debs on April 16, 2013 at 3:26am

I think I can answer the questions for you:

FFA can take between 2 cm and 8 cm of your hairline - so whether you end up deciding to wear a wig depends on how much you lose and of course if you personally want to use supplemental hair.

Redness/itching - I don't get redness/itching other people do, your scalp can itch in one area and not another, it is inflammation that is bad enough to be visible and itching so you are going to lose hair from the area at some time.

Genetic predisposition - FFA has not appeared historically in medical records. Both Dr Harries and a derm at my local hospital have told me that. So, our ancestors did not have this condition. I will ask Dr Harries if there is evidence of the tendency to develop FFA in families. I know Liz and her mum both have it.

Comment by Heidi Short UK on April 15, 2013 at 4:00pm

Hi Celia, 14th May would be better for me as its my sons birthday on the 15th, but if that date is ok for everyone else I will try and sort out cover at work. I will email you to get directions.

Comment by Jules UK on April 15, 2013 at 2:35pm

15th is OK for me too. I'm really looking forward to it! Celia, I'll email you for directions and email Caro to make arrangements if she'd like a lift.
Debs, would you perhaps mention to Dr Harries about the questionnaire we completed and when he anticipates getting any results / conclusions from it? Thanks.

Comment by Kath UK on April 15, 2013 at 1:25pm

Hi Celia
It's a great idea of yours to organise a 'get-together' and very kind of you to hostess it. I'm sure it'll go really well. I'm sorry I'm a bit too far away to come!
By the way; if anyone else in this group lives in Scotland, I'd be interested to hear from you and find out how you are getting on with your dermatologist/treatments etc.

Comment by Caro UK on April 15, 2013 at 12:06pm

Hi Celia. Thank you so much for the invite. I can only make 15 May as I am working the other two dates. Will be sorry to miss meeting up if that's not going to suit everyone else but can't be helped. X

Comment by Simone NJ USA on April 15, 2013 at 10:55am

Hi Debs:

Thank you for offering to take questions to Dr. Harries...could you ask him if he thinks a person with FFA was predisposed to this hair disorder from birth? My Derm is telling me that it was in my genes & that either was I would have gotten this disorder...also, do you know if the hair loss occurs around the areas where there is itching and redness?

Hope all I well...thanks again..x

Comment by Alice on April 15, 2013 at 8:01am

Debs, I have a question that my derm can't answer. I think it may apply to many of us. Why is most of the hair loss in places where the scalp does not have the red, bumpy follicle? Most of my hair loss is along the sides, whereas the inflammation and itching seems to be only on the top. If it's all from scarring this doesn't make sense. I'm wondering whether some of the hair could regrow. Or perhaps it's just wishful thinking.

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