Replies to This Discussion

Permalink Reply by Donna on October 29, 2017 at 11:29am

Im sorry about your diagnosis.I was just diagnosed my self a month ago. I also had no itching or red bumps that I could see. The dermatologist apparently saw the bumps. I have had a loss of eyebrows which I attributed to hypothyroidism.(my hypothryroidism is under control) I still have some eyebrows but barely. More loss on right side eyebrows & temples. I read that is common with a lot of people. I have been using rogaine since August on the temple area & sides.i think I can see a change but not sure. I don’t put it on the area where hair is totally gone. It won’t regrow the hair so I just put on the thinning parts.I have been using Clobestatol on the hairline for 3 weeks now. I have a follow up appointment on Nov. 28. I’m going to wait & see what the dermatologist says. If she sees new growth & and if the inflammation is reduced at all. Good luck to you. Just keep reading up on it. That’s what I’m doing.

Permalink Reply by sallylwess on October 29, 2017 at 12:37pm

I’m so very sorry for your diagnosis.  I am reading much about finesteride when it comes to promising results.  I personally did not try this form of treatment until my hair loss was very advanced.  (I didn’t try the treatment because I was not offered it in the beginning of my journey.)  

My symptoms have included red, itchy scalp, follicular inflammation (crusting and scaling), pain, and a feeling like my scalp was crawling.  I have lost hair (lots of it) in areas where I saw no symptoms, nor did I feel the symptoms.  I only realized the area (on my right side over the ear) was affected after I had lost a great deal of hair and could no longer cover the loss.

I think minoxidil (I use the generic.) is helpful and would encourage you to use it.  I also use topical ointments such as clobetasol solution and Pro-topic when I am either seeing scaling or redness or feeling itching and burning.  I did have cortisone shots for a short time, but I reacted to the shots with rashes on my face and chest, so I had to discontinue them.  

I wear a topper or a wig or a headband full-time now.  I don’t think we all have the same experience with this crazy disease.  I wish you the best.  Blessings.

Permalink Reply by Mattsmate on October 29, 2017 at 4:53pm

I was diagnosed in April. I had the same experience as Donna, I thought my eyebrow loss was related to my hypothyroidism.
I also have thick long hair (in my case, my natural hair is curly and coarse). I have had some sparse regrowth since I started planquenil and topical compounded dutasteride.
I have no real itching and no real redness or bumps.

Permalink Reply by Christi Q. on October 30, 2017 at 12:02pm

I was diagnosed a year ago.  Doc had me start Rogaine immediately which I think saved me from losing even MORE hair.  By the way, Rogaine should be used in the morning, not at night.  You don't want your face or eyes sleeping in those chemicals.  I am also on Dutasteride.  My eyebrows are pretty much gone now.  My hair stylist has helped greatly with creating bangs to cover.  The Rogaine also is a GREAT styling tool.  Gives my remaining hair a lot of fullness.  My hair was my crowning glory all my life....just gorgeous.  It was quite a shock for me to lose so much of it.  I was so stressed.  Couldn't sleep at all.  I'm so sorry you have been diagnosed.  Hang in there.  All these help groups on line are a big source of information and comfort.

Permalink Reply by Halfbakedwho on December 18, 2017 at 8:10am

Interesting about the night versus morning - my dermatologist was very specific - minoxidil at night but TWO HOURS before bedtime, and cortisone in the morning on my scalp. I admit I don't always wait the two hours just because I forget to put it in at about 8 or 9 PM : ( ! Maybe I will try in the morning...?

Permalink Reply by Tas463 on November 4, 2017 at 10:16pm

I was just diagnosed on Thursday, but first noticed the thinning almost 4 years ago. I asked my Dr, but he said it was  common after menopause. One of my co-workers heard me talking about it and told me a friend of hers had something similar and who her dermatologist was. Called right away and got an appointment and had 2 biopsies.  He started me on Doxycycline and Betamethasone ointment and I go for my first cortisone injection on Dec 5th.  I've been using Rogaine ever since I noticed the thinning, just in case it might help........switched to the 5% foam as soon as it came out.  He told me to continue and once the inflammation was under control he would be putting me on Finastereride.  I very rarely had itching.....the few times I did i figured it was from all the hair spray to hold it in place!  It has been very overwhelming, a lot of information to take in. I am grateful to have found this forum to read about other experiences.......

Permalink Reply by Jacqui on December 16, 2017 at 2:33am

I am so sorry for your diagnosis.  It's not fun at all but you will find this group a great source of support and knowledge.  I have no pearls of wisdom for you other than to give yourself time with your diagnosis.  I am 3 years past diagnosis and feel I am only know coming to terms with things.

I tried Planquinil, Finasteride, steroid injections and lastly Cellcept all without noticeable results so 3 months ago I stopped Cellcept. I feel much better about things now. I have had no noticeable change in hair loss since stopping. I got myself a different hair cut to try and cover my loss a bit better.

Jacqui