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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.

Comment by Classical Anne in NC mountains on October 10, 2014 at 4:40pm

Some interesting questions out there right now.

FLU - I had my injection last week and actually forgot about it til it popped up here.  I am high-risk and required to have the shot every year.  For me, no connection with my FFA.  Been regular with the flu shots since long before the FFA set in.

FRIZZ - I really hate it!  I have naturally curly hair which I've worked hard to tame all my life.  But this is a lot more frizz than curl, and I do not like it!  Terry, I will look for Elvive.  Thanks.

ARM HAIR [who knew this would ever be a topic of conversation?] I lost every single hair on my arms, and can even see the million tiny depressions where the follicles died.  But since I began using Rogaine on my eyebrows [not my hair], I've gotten about a dozen very fine blond hairs on my right arm, but not my left.  Go figure!  And though they've thinned, I've still got plenty to shave on my legs.  Where's the justice in that?!

JEN - my heart aches for you. I hate that you are losing hair so rapidly, especially as a young mom with so much else in your life.  I've got 2 different opinions on giving up at this point.  Yes, 6 months is too early to abandon all hope, though it may be time to seek a different combination of treatments.  On the other hand, if it's going so extremely that you know you'll be into a wig very soon, then I would say, "Let it!"  You don't need added stress in your life, which undeniably exacerbates the FFA and any other health problems you may have.  Maybe dropping all the treatments, and finding a wig you really feel good in, is the way to go, and may even serve to slow the stress-induced loss.  I wish you comfort and self-confidence again.

Comment by Liz on October 10, 2014 at 11:58am

Has anyone elses arm hairs gone frizzy too? I'm not particularly hairy and less so since I've had FFA but the hairs I do have on my arms look like they've been singed. They are almost zigzag 

Comment by Annie on October 10, 2014 at 11:03am

I'm having the same problem with my hair that so many of you are having.  The hairs around the areas where I have the ffa are wispy, curly, and full of electricity.  I suspect these hairs have been damaged by the ffa and just haven't completely fallen out yet (lovely thought).  It also seems like the rogaine foam contributes to my frizziness.  My hair is naturally straight, so I'm always fighting it.    My hairdresser showed me how to rub a tiny bit of argan or vitamin e oil on my fingers and lightly coat those flyaway hairs.  This trick has worked wonders for me.  I even keep a bottle of argan oil at work for humid days. 

Comment by Jen S. on October 10, 2014 at 8:26am

PS - I hated my hair in my profile pic - sure miss it now.  Oh well :-)

Comment by Jen S. on October 10, 2014 at 8:25am

Okay guys - reality check.  I was diagnosed in March - -so, about 6 months of treatment (and I am taking just about everything you can take) once all was up and going.  Still seem to be losing the battle.  I am on the verge of "giving up" the battle.  Am I being too hasty?  I was so very hopeful when this mess began and am now walking around in a bit of a cloud.  I suppose I am looking for a "atta' girl -- hang in there" on an overcast Friday morning in Atlanta.  Thanks for putting up with me, ladies! :-)

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