Replies to This Discussion

Permalink Reply by LVL on May 15, 2017 at 12:00am

Hang in there Annie May. We are here for you. So sorry to hear about your father passing. Can't imagine what you're going through. Hope you are holding up ok
I used a compound of minoxidil and finasteride. I had used it for about six or seven months and didn't notice any new growth so I had stopped it. Then about four months after, I noticed my hair was really falling out badly. After reading up about minoxidil which is Rogaine, I read that once you stop using it your hair will fall out. I was given doxycycline (antibiotic) to use but it was making me vomit. I have now been on plaquenil for about three weeks. I am also using a Hair system called Monat, the let it grow system. I'm not sure if it's the plaquinil or Monat but my hair has significantly stopped shedding. My hair loss was REALLY bad when I would shower and dry my hair, and was shedding all over my apartment. And honestly it has significantly stopped. The only side effect I'm noticing from the plaqenil is extreme bloating and cramping. Not sure if this helps but maybe some things to talk about with your doctor.

Permalink Reply by Beez on May 15, 2017 at 12:44am

Steroids did nothing for me ....my doc says it reduced inflammation but if my hair is still falling out then what's the point?

Permalink Reply by illustr8r on May 15, 2017 at 5:14pm

I was diagnosed a few weeks ago and have been using Clobetasol once a day when I go to bed. It seemed to be really helping but today the top of my head has pinpoint tingling/burning. It's very distracting as I fear more hair is about to shed.

Got my haircut for the first time since my diagnosis and my hairstylist thinks I've lost about 2.5 cm of my hairline. She said that my hair is finer and more delicate. I guess that's the fibrosing part. I have enough to hide my forehead but it's getting so wispy.I have fine hair and I used to have a lot more of it. So disheartening.

Having a bad day. I hate this stupid disease.

Permalink Reply by AnnieMay on May 15, 2017 at 11:20pm

I'm right there with you. I felt like my head had the same "pinpoint tingling/feeling" all day. I feel like my scalp is so sensitive right now which scares me. I went shopping with my sweet daughter today and tried to distract my self but I'm so down. 

I've had a couple bad days with mothers day. It's so hard to be with my daughter and other moms and not feel upset? and honestly scared. It's one thing to think I have this, it's not going to get worse, I'm going to do what I can to solve this problem and be ok but from reading so much information and the posts here I don't feel a lot of hope which is beyond discouraging. . .

Were you using Clobetasol all over your head or only on the areas that have been receding? And I feel like the sides have gotten so thin for me. 

I had a high forehead to begin with so I'm just feeling so incredibly down. . .no one understands so I'm so thankful for this site. Not sure how but somehow I have to find my way through this horrible disease  

Permalink Reply by Beez on May 15, 2017 at 11:37pm

Oh how I do understand all those emotions! Sometimes I feel so sad and helpless and every time I see new 'inroads' in my hairline I panic. I have already completely lost my brows. Nothing seems to have helped: painful steroid injections, topical steroids, Plaquinil, organic shampoos, calming shampoos, vitamin D. Even thinking about it makes my scalp burn and itch! I am presently using 5% Rogaine as a last effort. I hate this disease too....and no one understands it like those here so I guess I'll keep visiting this site! Hang in there, you're not alone.

Permalink Reply by LVL on May 16, 2017 at 12:09am

I completely understand. I hate this disease sooo much. I noticed my hairline thinning even more today and it's been stressing me bad. Seems like nothing actually works. I'm only 33. It's so hard to deal with and not let it consume you. I'm grateful we have this platform to share and listen. Friends just don't get it and aren't very comforting. Glad we all have each other at least.

Permalink Reply by AnnieMay on June 11, 2017 at 12:26pm

Hi all  I seem to be having a flare up and my scalp feels like it's on fire! And I have more inflammation along my hairline. Makes me scared of whats to come. I've been using a topical steroid and I thought that it was supposed to help with the burning and itching??? What do you do for the burning tingling feelings? Trying to not think about this stupid disease but this makes it very hard. 

Permalink Reply by AnnieMay on May 16, 2017 at 12:36am

Thank you all. I think sometimes you just have to let it out and honestly just be so mad about this! It has only been 6 weeks from my diagnosis and it has a way of taking you down to your knees and consuming your life. Just HATE this. My husband was trying to be supportive and said I'm losing my hair too. Until you are right where we are now it's hard to explain how awful this is. 

I'm not a person who is great with makeup, hair pieces etc but I'm also a person who loves being out in the world looking stylish and nice. . I am an active person who has always love sailing, skiing, hiking and traveling. . All of which is gives me so much anxiety now? We have a family event coming up on the river on a boat. I can't imagine going. . .

My Dad passed away on Monday and his message to me was life is short. Do what you want! How do we not let this consume our lives???