Comment

Comment by Robyn, Melb. Australia on February 12, 2013 at 5:54pm

Hi Rebecca,
I'm not really sure whether the Plaquenil helps with the redness & itching as I have never experienced that and I was diagnosed about 3 months after noticing the first small bald patch near my hairline- the biopsy I had indicated FFA with some scalp irritation which cleared up using Serbizole hair shampoo. The irritation was very mild though and only a bit like dandruff. My specialist prescribed a couple of steriod based lotions for redness etc, but that never eventuated so I didn't use them for very long. My experience is that my FFA appears to be moving slowly compared to some of the comments I have read here and it's possible that is because of the Plaquenil but I couldn't say that for certain - it does sound like a couple of others on the Plaquenil are having some success also though, so I think it's worth a try if it agrees with you. It would be wise to check with your specialist about that.
Celia, I have also decided not to tell people about my condition apart from close family & a couple of friends. It's a strange type of condition to talk about and quite personal. I think because it involves in our 'vanity' we feel slightly embarrassed about feeling so distressed. No one I've told thinks any differently about me and they were all very supportive.

Comment by Heidi Short UK on February 12, 2013 at 5:20pm

Hi Rebecca I'm on hydroxychloroquine which I believe is the same as plaquernil. I'm sure it has helped slow the hair loss down but it hasn't stopped it! Sorry but I don't think there is a magical cure at the moment. I think it gradually burns out but I don't think anyone of us can honestly say they have heard that it just stops. I think most of us on this web site are relatively new to FFA (one to two years) it would be nice to speak to somone who has had it for ten years to see what they had to say!

Comment by Alice on February 12, 2013 at 8:14am

Aimee - In addition to using the tea tree oil shampoo & conditioner, I apply pharmaceutical grade tea tree oil directly to my scalp, w/out diluting it. There may be a more effective method, but I put my finger over the opening and tip the bottle over. Then, I start at the hairline and kind of "scratch" the oil back w/ my fingertips. It's a very thin oil (and my hair is pretty fine), so seems to spread easily. It smells strong at first but dissipates quickly. Unlike the clobetasol I was using, I don't have to worry about the tree oil dripping. I wouldn't want to get it in my eyes, though.

Comment by AC from CA, USA on February 11, 2013 at 11:56pm

Hi Pam-- Thanks for the reply. I am in Sacramento. I will definitely lobby for Plaquenil, though my derm wants to wait for the biopsy results. That said, I'm not really willing to wait 3-4 weeks without getting treatment. Thanks again to all for the sharing of experiences.

Comment by Robyn, Melb. Australia on February 11, 2013 at 9:20pm

Hi ladies,
Just catching up on all the information as I haven't been on the site since Friday. Simone I don't believe I have had any side effects from the Plaquenil and I have been on it for almost 2 years now. I am getting my eyes checked every year (no sign of any retina damage at this stage) and will continue to monitor that as I don't want to create a more serious problem! At 59yrs old I try to keep fit and healthy with moderate exercise and a good diet and in the past 2 yrs I have kept my weight the lowest I have been since my 20's. I am wondering whether the Plaquenil has something to do with that as when I first went on it I read some feedback that suggested people tended to lose weight. I also mentioned previously that I no longer get heyfever having had it all my life - also wondering if Plaquenil would be affecting that (which is a good thing). I believe my FFA is slow moving (possibly due to Plaquenil) and I have never had signs of itching, redness etc that a lot of you are talking about, which is some consolation. My specialist checks carefully for those signs when I see her which is at the moment every 6 months. While the photos of my hairline she has taken certainly show a difference to 2 yrs ago it has only moved about 2cm in total with a bit of thinning at the sides. My eyebrows may have thinned a bit, but I still get them plucked so I don't really notice that.
Sandy in regard to hair style I am still colouring my hair (look way older than 59yrs if I let it go grey - and the hair loss is bad enough!) however I only use a semi-permanent which is probably a bit gentler than a permanent colour. I have very curly hair however I prefer to have a straight fringe (I think you ladies call that bangs?) with curls behind - short hair and I'm gradually taking it shorter. The fringe covers the receding to a degree, but I'm not sure how much longer I will get away with that! Curly all over is a bit old-fashioned looking so I'm keeping with the straight fringe for the time being. Of course always having had curly hair - I have always wanted straight hair! Maybe a wig won't be so bad after all - I won't have to use a straightener!
Hi Aimee, I think we all understand what you are going through and I hope you find everyone's support helpful, I certainly have.
Love reading all this, thanks everyone. Robyn

Comment by PamW San Diego, CA, USA on February 11, 2013 at 8:14pm

I want to address my comments to AC. Where in CA are you. Judy, Lacy and I are from the San Diego area. I felt your pain in your comments. We are all there with you. Some of us are now on Plaquenil, which for most of us has calmed our symptoms. this drug can take 3 to 6 months to begin working, but there are other drugs that you can get to help you bridge until Plaquenil begins to work.

Zyrtec helps during the day with itching and Benadryl at night. Also, Doxycycline is an antibiotic with ant inflammatory properties that can help calm the redness. I took it for 3 months until the Plaquenil I kicked in. Go to your doctor and insist on treatment. Tell them you might have scarring alopecia and every day counts!

Robyn I have been on Plaquenil sine the beginning of August and I am ok.

Stacey, some members have tried minoxidil but I am not sure if anyone can really tell you if it works.

Good luck to all of you.

Comment by Simone NJ USA on February 11, 2013 at 6:26pm

Hi Robyn:

I just read your comment that you have been on Planquenil. Have you had any side effects as get and is your FFA still seems to be slowing since your last comment in Jan?

Comment by Alice on February 11, 2013 at 5:06pm

Ellen, I've been using Nature's Gate Tea Tree Oil Shampoo & Conditioner and find it to be very soothing. I also use straight tea tree oil on my scalp to help w/ the itching. I agree that gentler is better.

Comment by Alice on February 11, 2013 at 5:01pm

Comment by AC from CA, USA on February 11, 2013 at 4:57pm

Continued....

Since getting the formal diagnosis last week, I’ve used my old Elidel prescription for my skin & been trying that on my hairline, forehead & eyebrows. It’s too soon to know if it helps, but it certainly isn’t having the same skin calming effects it did for me years ago.

I been on a low carb, gluten free diet for 3-4 weeks & have lost about 8 lbs. I began taking natural dessicated thyroid to boost my thyroid hormone levels. This weekend, I also started a suite of herbs that are supposed to provide benefits against skin inflammations. Lastly, I bought some bimatoprost (Careprost) & I am trying that for my eyebrows & eyelashes.

I appreciate the sorority of advice & experience here on this forum. I don’t think anyone can understand the psychology of this condition without experiencing it. In fact, when I think about it, my intellect says, “good grief, woman, this is not the end of the world!” but then I see the bald patches & the skin that looks awful & aged & the whole picture looks to me like someone who is ill—& it just brings up an insane amount of panic & stress. Doing all I can to balance myself here at the brink of panic, sadness, & loss.

Alice—you seem to have the itchiness/pain that I am experiencing & you mentioned tea tree oil use on your scalp—do you dilute it to apply it?

Others—what about those Kingsley hair drops? Has anyone found them useful?

Appreciation,
Aimee

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