Comment

Comment by Liz on January 22, 2013 at 12:50pm

I'm not sure how many of us in the group live in the uk but I was thinking that it would be nice to meet up when the weather gets a bit nicer. Maybe we could arrange something if anyone else is interested?
x

Comment by Debs on January 22, 2013 at 12:15pm

Hi Celia, thanks for the update on your visit to Dr Harries. I have not noticed this dent on my scalp, now you have mentioned it I will keep an eye out for it. I am so sorry to hear about your sister-in-laws health problems, I do hope she gets a clean bill of health when she gets her results. Knowing what is happening at your appointments means I have realist expectations of my own appointment next month, it is a huge help. XX

Comment by Jules UK on January 22, 2013 at 9:22am

I can't detect anything like a ridge yet, but my hairloss is mainly at the sides so far. I'll keep a look out and see what develops over time. This might be the sort of info that should be interesting for Dr Harries - he said he'd not heard of red spots between the eyebrows as has also been mentioned.

Comment by Liz on January 22, 2013 at 6:50am

It reminds a bit of a burn scar because the skin is thinner, indented and has no colour at all x

Comment by Liz on January 22, 2013 at 6:39am

I have exactly the same thing Celia, just in front of the hairline. Its a dip in the central area of my hairline (where it was originally), seevral inches long at least and it was definatly not there before I had this problem.xx

Comment by Jules UK on January 22, 2013 at 6:24am

Hi Celia, re drinking and meds, I was a bit miffed at missing out on wine with my Xmas dinner. So checked with a friend, who's a GP, and she said, although not generally recommended, I could try a drink or 2. So I did, with no ill effects, and now I'm drinking as much as I normally used to. Not a big drinker, just about 1 bottle of wine at most over a week. Always with food. We're all different, of course, so I wouldn't say ignore Dr's advice if you're concerned. X

Comment by Jules UK on January 22, 2013 at 5:27am

Morning everyone. I'm due to see Dr Harries on 1st March for my 2nd appt. He recommended a derm in Sutton Coldfield and I may just switch to her.He said they attend conferences regularly and pool information. I agree with what's been said about medication being so hit and miss. My hairloss got noticeably worse once I started using Protopic, lots each time I wash my hair (every day!). Coincidence, maybe, but the day after I stopped it, having used it for 6weeks, the hairloss lessened sharply. Carrying on with the doxycycline with no side effects.
Like Celia, I know people with life threatening illnesses and it does pull me up sharply. A reality check! Hope your sister in law has positive news. X

Comment by Liz on January 22, 2013 at 4:23am

Good mornign Celia. I wonder who the 'good dermatologist' is in Brighton. I imagine it's the one that I saw who isnt thaat good unless you want to pay him privatly. Strange really becuse now Im waiting for my appointment with Dr Harries!
I was prescribed plaqunil but I'm not risking it. I'd rather be bald that have my eyesight get worse than it is already. I've been told that one effect of the plaqunil is that you lose the colour vision in your eye. As an artist with poor eyesight I cant afford to risk it
It's a shame that there is no definative answer to our hairloss. I guess we can just try to find out as much as possible so that eventually they find a way of helping. It runs in my family so hopefully my children and grandchildren will be able to treat it because of us and our input.
Have a good day Celia and my best wishes that everything goes well for your sister in law.
xx

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.

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