Comment

Comment by PamW San Diego, CA, USA on February 1, 2013 at 8:09pm

Debs, I am so glad that your first day went well. I felt your anxiety. Everything should be easier and easier for you from here on out! I think you have the perfect face for a wig. I think I would look silly.

Rebecca, prednisone has side effects, too. I actually think Plaquenil is safer to take. Actos can be dangerous, if given in high doses and for a long duration of time. I take the minimal amount and will only take it for a few months.

Comment by Susanne on February 1, 2013 at 3:27pm

The more I read here, the more I understand that none of these dermatologists have any answers. Rebecca, where are you in Germany? I'm originally from the south near Stuttgart but spent last summer working in Berlin. I teach German here in the States.

Comment by Debs on February 1, 2013 at 2:03pm

Rebecca, I know from your previous posts your are having steriod injections, is your dermatologist in Berlin giving you any of the drugs that Dr Harries in the UK is using to treat FFA - doxycline or planquenil ? These 2 dermatologists are both seeing lots of ladies with FFA so I am curious if they are using the same treatment regimes.
Well, my first day at work in a wig went without incidence, a few people commented that I had a new hair style and said it look nice, I wore a short chin length bob wig that is smart and very understated, I feel like a huge weight has been lifted off my shoulders now I have got that over and done with. Have a lovely weekend everyone. XXX

Comment by Susanne on February 1, 2013 at 8:40am

Good luck, Debs! Rebecca, I would be curious to know what your dermatologist thinks FFA is, if it's not an autoimmune disease. Why would our immune systems be attacking perfectly healthy hair follicles? I do agree that we don't know if the gluten-free thing works and I'm not far enough into it to be able to tell. I can tell that I'm less depressed and my skin has pretty much cleared up completely. So there's something to it. As far as FFA goes, time will tell. In any case, here's wishing all of you ladies on this post strength and courage. Have a great weekend.

Comment by Jules UK on February 1, 2013 at 4:20am

Yes, good luck, Debs! It's a major step but from your photo, if anyone comments, it's going to be complimentary. X

Comment by Debs on February 1, 2013 at 1:01am

Hi Celia, I see Dr Harries on 22 Feb. I will ask him about gluten free diets... I am going to work today, wearing a wig for the first time at work, I feel physically sick at the thought of people looking at me. Going out socially with my friends/family is fine as they are all on my side if you know what I mean but work colleagues can be different. Oh well... off I go to face the music. XXXX

Comment by KarenGinny - Iowa, US on January 31, 2013 at 8:09pm

I'm finding this interesting regarding trying a gluten free diet to ease our symptoms. Since I have a son who is autistic, I've read alot about some people going on a gluten-free,casein-free diet to improve symptoms of autism. It sounds like some people are genuinely allergic to gluten- "celiac disease", while others are bothered to a lesser degree. We tried the diet with our son some years back but it was difficult since he was so picky. It was hard to find substitutes for things he liked. But now it seems like it's become more popular and there are more products out there to take the place of gluten. Most stores have a health-food section with gluten free products. Of course mostly a person just needs to eat healthier, fresh fruit and veggies, low fat dairy and protein, etc. I found this link interesting - Anti-Inflammatory Diet (Sjogren's Syndrome Foundation) I should probably try to do this.

Comment by Liz on January 31, 2013 at 6:16pm

I dont have my appointment through, with Dr Harries, yet Celia. I think I may give Gluten a miss. When I've looked in to it before it seems like it's in everything. I've bought a couple of books on the kindle on the Paleo diet (I think that's what it's called). I haven't looked at them yet but maybe they'll be helpfull.
x

Comment by Heidi Short UK on January 31, 2013 at 5:38pm

Hi All
When I first went to my private dermotologist back in May 2012, my daughter came with me, she asked him face to face, is this disease heriditary and he said NO! He did however say, auto-ammune problems are heriditary. The confusion gets worse! We are getting such mixed messages, I will ask my dermotologist the same question next week and see if she says anything different! Has anyone got any questions they would like me to ask? My mum didn't suffer from FFA!

Comment by Susanne on January 31, 2013 at 4:56pm

Hearing that the Protopic made things worse is worrisome. Oh no! I just got back from a follow-up with my Acupuncturist/Nutritionist, and we've determined that things are definitely better and she once again emphasized that for people with autoimmune conditions, gluten has to go, so I'm really committing myself to a life without it. I figure I've been around 52 years, I've had a lot of bread and pizza, I can do this. She wants me to curb my 1-2 glasses of wine/night habit and that's going to be hard, but February I'm taking it for a test-drive. Jules, good luck with the gluten-free diet. There are a lot more products on the market now since Celiac's disease seems to be more widespread. It's so much easier.

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