Comment

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.

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.

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