Comment

Comment by Meme on October 15, 2014 at 4:33am

Hello C

I am so sorry it doesn’t look like I will be able to come to yours on Thursday. I have been in bed for the past 2 days with a vomiting virus and although I am feeling better I certainly do not wish to pass it on to you and the ladies. I also do not feel up to the drive. I apologise for letting you down as I know you will have gone to a lot of effort. I am also upset as I did find the get together last time a real boost to my self-esteem, just being able to see and talk with you all.

Have a lovely day, sorry again

 

Meme x  

Comment by Rita - Canada on October 14, 2014 at 4:25pm

Hi MJ, I am curious if eggs are allowed on your anti inflammatory diet as they are on the Paleo diet and what is the name of the one you are following?  I came across another anti inflammatory diet- Dr.David Perlmutter,neurologist. It does get confusing as to what is considered to contribute to inflammation.  The rest of the foods mentioned by Annie would be the same pretty much. Thanks.

Comment by MJ on October 14, 2014 at 3:58pm

Annie, I too have followed an anti inflammatory diet. I was really strict for about six months, literally logging in a notebook everything I ate. I was a changed person. Never felt better in my life. That honestly helped me deal with the FFA. I am still pretty good, but not as rigid. Really hard with a busy schedule and fanily. My hairloss has not been too bad since diagnosis last December. Keep it up if you can. mJ?

Comment by Celia on October 14, 2014 at 12:44pm

Message for Mary from Amersham - I just saw that you have joined our merry band - welcome !  You are very close to where I live and we are having a get together near Beaconsfield this Thursday - you are very welcome to join us ! If you can figure out how - send me your e mail as a message on this site - into my inbox and I'll give you directions if you would like to come on Thurs.

Comment by Annie on October 14, 2014 at 10:56am

Hi all, I wanted to let you know about my latest endeavor to try to lessen the inflammation caused by my ffa.  I saw a lecture regarding inflammation / weight loss on a PBS station with nutrition specialist JJ Virgin.  On her diet plan you take 7 high inflammatory  foods out of your diet for 3 weeks (dairy, gluten, corn, sugar & artificial sweeteners, soy, peanuts, & eggs) then start adding them back into your diet one at a time to try to figure out which ones are causing problems.  I've been taking plaquenil for over a year, and it has helped, but it has not slowed down my fffa symptoms as much as I like.  Anyway, I decided to try JJ Virgin's diet plan.  After all, I can do anything for three weeks.  I started to tell a difference in my joint aches & pains after only three days.  Two weeks into the diet I could see that my scalp was less pink in the areas affected by the ffa.  I think it's probably too early see any difference in the hairloss, but I'm encouraged.  Today is my 21st day on the diet.  I honestly feel better, plus I've lost 7 pounds!  I have my 6 month appointment with my doctor next week, so I'll let you know if he notices any improvement in my ffa.

Comment by PamW San Diego, CA, USA on October 14, 2014 at 9:41am

Thank you, Rebecca. So, no inflammation means no itching and burning, correct? Also, how long can you remain on that dosage? Also, is your hair loss stabilized?

Comment by PamW San Diego, CA, USA on October 13, 2014 at 9:27pm

Polly, thank you for the update. I am interested in knowing more about Cellcept from Rebecca. How long did it take before you noticed a reduction in the inflammation on your scalp. My scalp is still pink, burns and itches after almost 3 years of Plaquenil. I am really looking for some relief.

Comment by Polly UK on October 13, 2014 at 10:31am

I am sorry to miss the meeting at C's this week in the UK so I thought I would put an update on here as I haven't been on for a while.

My FFA (touch wood) is still fairly stable, some days I lose a lot of hair and others hardly any. The inflammation is minimal and I don't think my hairline has receded very much more and because my remaining hair is still thick I can cover the loss. It's still active at the sides because I can sometimes pull hairs out without any feeling!

I'm taking one Hydroxy daily cut down from two because of the dark pigmentation on my neck and chin which my derm and several of his colleagues agree is a rare side effect of that medication. I also still take an antihistamine each night which I'm sure has helped with the itching and sensitivity. I'm not using any steroid on my scalp and my shampoo and conditioner is whatever anti frizz and relaxing smoothing product my hairdresser is using. I have my hair washed and blow dried weekly there so it always looks as good as possible.

Like Debs I recently had inflammation in my eye which caused a build up of pressure. This has cleared with steroid drops which I applied for 6 weeks and I now have an ingrowing eyelash in my upper eyelid. I believe these two things are connected and are also most likely autoimmune too.

I have problems like many others with flat frizzy hair in the front section - that whole area affected by the FFA has definitely changed for the worse. Last week I had it cut a bit shorter which seems to have helped and also my roots done which always make me feel better :)

I lost all the hair on my arms and now have some fine short higgledy piggledy ones mainly due I think to the biotin I take daily.

I thought very hard about the flu jab this year - I've had it for the last few years due to being in two high risk categories and wondered if it might have been a trigger even though the medics say it's not live! I came home from our recent cruise with a cold and struggled once again with my asthma and that has made up my mind to have the jab and I've booked it for early November.

I still hate being out on a windy day but have invested in some handy bands from Seasalt which cover up my brown stained neck and can be quickly pulled on to my hair to stop the wind blowing it back to expose my bald areas.

I will be thinking of you ladies on Thursday, hope you have a good meeting and I look forward to hearing any news.

Polly x

Comment by Anne Louise on October 11, 2014 at 8:02pm

I've thought it strange too, how the few remaining hairs on my arms look like they've been singed. I've been getting the flu shot for 20 years and have never had any reactions or problems. And I have curly hair but the stray surviving hairs on my hairline are wiry and don't like to cooperate with the rest of my hair. Very annoying. I still don't need a wig at this point, but I do worry about finding one to match my curls.

On a random note, I've changed the type of K-cups I've been using. I love my Keurig and have had one since my baby was born 4 1/2 years ago. I got to thinking about the boiling hot water going through the plastic, wondering what could be leaching into my beloved cup of coffee. Could the rise in FFA cases be related to the rise in use of K-cups? Who knows. I know FFA has been around long before the Keurig was invented, but I seem to recall a theory about dioxins (environmental junk) contributing to the cause of FFA. At any rate, I'm not ready to give up the convenience of the K-cup but I did find organic, plastic free cups that work great and the coffee tastes fine.

Comment by Alice on October 11, 2014 at 4:41pm

Liz, I have noticed that the hair I have left on my arms, which used to be quite hairy, is very fine and sticks out every which way. Some of it looks like it has been singed. The hair left on my legs, mostly around the knee,  does not look like this. Go figure.

• ‹ Previous
• 1
• …
• 259
• 260
• 261
• 262
• 263
• …
• 506
• Next ›
• Page