Comment

Comment by Debs on April 18, 2013 at 6:11am

Hello Julie, good grief I didn't realise there was another anti-malarial after the plaquenil... I will be poised tomorrow with my pen and paper so I won't forget anything... XXX

Comment by Jules UK on April 18, 2013 at 4:14am

Hi Debs, Dr Harries photographed my hairline on my 1st visit, but not my 2nd. He only measured the loss when I asked him to. He's the 3rd doctor to tell me I'm coping well with this - how little they know! Inside it's "Aaaaaaargh!!" But I was surprised to find I'd lost 2cm from the front already. It'll be interesting to see what he suggests to follow plaquenil. There is a stronger anti- malarial drug but it's side effects usually preclude its use, especially if you've had any form of cancer. Sorry, can't remember it's name.
Good luck, and enjoy your concert! Julie x

Comment by Debs on April 18, 2013 at 4:06am

Celia thanks for the encouragement. I am going into London tonight to see a classical concert at St Martins In The Field with a few friends. That will take my mind off my appointment tomorrow. Last time I had my head photographed, I imagine I will have another photo taken tomorrow to compare the hair loss, I know there has been some. Tonight though I will be wearing a nice long wig out so I will have hair by whatever means necessary. XXXX

Comment by Debs on April 17, 2013 at 7:28am

Pam thanks for the questions, it doesn't really make sense that your scalp changes over the course of the day... and of course what is his 'plan B' after the plaqeunil... yikes, I hope he has one!!!

Comment by Heidi Short UK on April 17, 2013 at 3:21am

Hi everyone, hope all goes well for you with Dr Harries Debs! Celia as buses are out of the question how about by train, is there a station near you? I will speak to work today regarding getting 15th off, looking forward to seeing you all face to face!!

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.

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