Comment

Comment by Alice on June 14, 2015 at 5:38pm

Sallylwess, I am also trying to disguise a high forehead. Not so easy to wear bangs with curly hair. The video you posted was interesting.  Has anyone had sucess using sunless tanners along the hairline?  There was a discusdion about I a while ago.

Comment by HairSuper on June 14, 2015 at 10:24am

Hello Missy and welcome. I buy all my wigs from www.hairsuper.com. I shop online and pick a wig I like and then I go to youtube and find video of ladies who have purchased the wig to see what it actually looks like. Every wig I have purchased has been great for me.

Comment by Will Be Healed on June 13, 2015 at 6:55pm

Ladies,I started losing hair when I had my second child at the age of 32 and I am now 38. I have lost about half an inch at the top hair line and an inch and a half on my right side above my ear. My left side has thinned but for some reason by right side is worse. My eye brows have thined but thankfully I still have some hair. What keeps me going is my faith in God. I continue to remind myself that Jesus heals and I can and will be healed. Don't get me wronge I do waiver back and forth, but when I keep my focus on God I see less hair loss and more hair growth. Although my growth is minimal, I am thankful for the growth I have and the hair I have left. God gives me hope and he helps me through this. My derm tells me that I have no scarring and that I have the potential to grow more hair back. I pray everyday for Gods healing and I am believing for his healing. I pray that we all keep hope and are healed of this disease.

Comment by Jules UK on June 13, 2015 at 4:14pm

After a long break.... It's interesting to read the different thoughts on Plaquenil. After moving house, (very stressful) I let my Plaquenil prescription lapse. I noticed pretty soon that hairloss worsened. At my derm appt, I was told I'd lost a further 2cm from the left side behind my ear, between August 2014 and June this year. So I'm now back on it. I found that it was really, really hard to contemplate losing still more hair so quickly.
Was it stress or coming off Plaquenil? Who knows. Eye test next week.
Today, I visited my lovely hair man in Cheltenham for new side "whiskers". He's going to try to "razor" the edges so they look more natural. I cut my head at work this week and was so scared the first aider would pull my hair back for a big reveal! I had quite an audience. Fortunately, it ended well with my secret intact.

Comment by sallylwess on June 13, 2015 at 3:25pm

Hi all.  Thank you for all of the discussion on Plaquenil.  I have not taken it.  I had thought of taking it a few months ago when I reacted with rashes to the foam Clobetasol and to the Kenalog injections.  My derm told me I had to see my eye doctor to get the ok, and then, I just decided it was not worth the risk.  I've had FFA from 2006.  It was not diagnosed until 2013.  I have lost all of my eyebrows and at least two inches back of my hair.  I no longer can even cut a bang that doesn't look funny, but as I have let my hair grow, I have been able to do a side long bang that is curly.  My new hairdresser convinced me that it looks like I have a high forehead, but that it doesn't look odd.  She encouraged me to wear my hair as it is after I had actually already given up on the wigs and toppers.  I was uncomfortable in them.  They covered the hair I had left that I still liked.  They were hot and itchy.  I was just at a place of acceptance.  I am wearing my hair that I have left, and I am over stressing about the loss.  I am not treating it.  I am just accepting it.  My hair dressing suggested using a darker shade of bronzer on my hairline to contour and hide the high forehead.  I haven't tried it yet, but I thought you might like to see the youtube video she showed me.  It can be found here:  https://www.youtube.com/watch?v=16mWjaMHRJI  Acceptance is a powerful and freeing thing.  I may find I am less accepting if I lose more hair, but I am at as much peace as possible at this time.  

Comment by Mel on June 13, 2015 at 1:07pm

Thank you, Anne. Good info. It's pretty confusing. ...Interesting about eyebrows first. I wish I knew what happened first. I really don't have leg hair anymore and my eyebrows did not disappear, but thinned. But I didn't even really notice when that happened so I don't know if those things happened before the redness to my hairline, or not.
Maybe the Plaquenil you took has helped -- who knows -- so I'm leery to take it and also afraid somewhat to go agains the dermatologists advice and NOT take it, but that may be a good option for my sanity (?) I'm going to try the foam, Clobetosol.

Comment by Anne Louise on June 13, 2015 at 12:49pm

Hi Lo, My friend with the hair loss still wears it naturally.  You would never know to look at her.  Her bangs start way back, she has very straight hair.  Her eyebrows are tatooed (she was the one who referred me to an excellent eyebrow person) and look very natural.  I think she has had FFA for about 4 years and has been on and off Plaquenil during that time.

I have very thick curly hair and began with a low hairline, so thankfully the hairloss is not noticeable to others.  I now sport bangs, which are a bit tricky and took some getting used to with my curls, but now I like them.  My hair stylist calls bangs cheap botox!  The skin on my forehead seems to have changed and is sort of bumpy...maybe it's age, maybe it's the FFA, or maybe it's been like that for years but I've only put it under a microscope since my diagnosis ;-).

My hair loss has been very slow.  I first noticed it around Thanksgiving '13, and since then it's only about a 1/2 inch or so. My derm in March remarked that i've stabilized and my hair stylist insists she doesn't see any loss, but I'm not so sure.  Now that I have bangs I don't monitor and stare every day at my hairline.  I was taking photos of my eyebrows and hairline every month, but I havne't done that since last June.

I swear I read somewhere that if eyebrow loss occurs first the case tends to be more mild.  But now I can't seem to find that article.  I have lost my thick dark eyebrows completely, over the course of a year.  If my hair remains like it is now I would be one happy lady!

Comment by Lo on June 13, 2015 at 11:54am

Hi Anne Louise. Would you mind if I asked you if your friend who has lost the 2 inches is still wearing her hair naturally? And was she on the Plaqeunil those whole 2 years? And how has your rate of loss been... You said slow (and slow is good!!), but are you able to wear your own hair? Many thanks. I e been on plaquenil for 4.5 months and have had 2 eye exams and bit were great. So I said I'd give it a year.

Comment by Anne Louise on June 13, 2015 at 11:33am

Mel, I can share my experience with Plaquenil as well.  As a nurse working with the blind for many years, I was obviously very hesitant to try it.  However, being newly diagnosed and desperate, I decided to try it.  I was diagnosed with FFA Feb '14 and took Plaqenil and Doxy starting in March'14.  Had my eyes checked in June and then again in December '14...the recommendation is every 6 month eye exams.  Well at the December checkup, after being on it for 9 months, the eye doctor noticed some slight changes to my retina.  I noticed no vision changes.  I came off it immediately.  Both my derm and eye docs said the damage caught that early would be reversible.

I have now been off Plaquenil for 6 months and have not noicted any changes in my rate of hair loss.  For me, the Plaquenil and Doxy didn't seem to make much differeince. Thankfully my hairline loss has been very slow.  The hair on my legs is pretty much completely gone over the past 6 months.  Finally something to be grateful about with FFA!  I do continue with Clobetasol to my scalp, although I apply it randomly every few nights, not religiously every night like I did last year.

I do have a colleague with FFA who swears by the Plaquenil.  She takes it for Lyme disease as well and says that when she is off it (I think she takes 6 month breaks) her hair sheds much faster.  She has lost over 2 inches of her hairline in about 4 years.

So I guess my point is, Plaquenil may work for you.  If you are faithful to your 6 month eye exams, any damage would get caught early.  I am glad I tried it but will not go near it again.  Good luck in whatever you decide, this is a very frustrating disease.

Comment by Alice on June 13, 2015 at 9:16am

Terry, you might want to recheck the biotin dosages. The supplement I take is 5,000 mcg, as in micrograms not milligrams,  which is 1,667 times the RDA. I buy it at Costco and it dissolves in the mouth. Of course, here is no way to tell if it is helping.

• ‹ Previous
• 1
• …
• 224
• 225
• 226
• 227
• 228
• …
• 506
• Next ›
• Page