AnnieMay
  • Female
  • Portland, OR
  • United States
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AnnieMay replied to Charlotte's discussion Facial papules in the group Frontal Fibrosing Alopecia
"I am so appreciative of all I learn from all of you on this site. I don't really have the facial papules/bumps but the texture of my skin seems very different now? Along my temples it looks very mottled and scarred? And I have some white spots?…"
yesterday
AnnieMay replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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…"
May 16
LVL replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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…"
May 16
Beez replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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,…"
May 15
AnnieMay replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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…"
May 15
illustr8r replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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…"
May 15
Hazel liked AnnieMay's discussion Your experience with topical steroid lotions?
May 15
Beez replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"Steroids did nothing for me ....my doc says it reduced inflammation but if my hair is still falling out then what's the point?"
May 15
LVL replied to AnnieMay's discussion Your experience with topical steroid lotions? in the group Frontal Fibrosing Alopecia
"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…"
May 15
AnnieMay added a discussion to the group Frontal Fibrosing Alopecia
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Your experience with topical steroid lotions?

Hi all-I was officially diagnosed 6 weeks ago. Mr dr prescribed Betamethasone Dipropionate Lotion applied once a day. But I feel like every time I use it my scalp burns, gets red and feels so hot. My forehead skin looks thinner somehow and you can see my veins more? I've been using it at night and I honestly think it makes me feel hyper so I don't sleep well. I stopped it for a couple of days and felt better. Have any of you experienced things like this?I'm also not sure if it's helping because…See More
May 14
Airam-FFA replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"Hi Mel Your post is so positive. I wish you strength for all you are going through. Life is so tough at times. Thinking of you and wishing you well. xOx"
Apr 30
Nerida replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"Hi, Regarding Tattoos I have not eyebrows.  I use to use stick on eyebrows which can look get.  I uses to get mine from 'finial touch' eyebrows.  They are expensive and a pain to attach and really only look their best for a…"
Apr 30
Airam-FFA replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"Hi AnnieMay I am constantly assessing other people's hairline to convince myself that my loss isn't 'too bad'; I try to also keep busy so as to not focus completely on my appearance, and I hang on to any positives that I can…"
Apr 30
AnnieMay replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"Thank you! I have two bald spots in front of my ears and my temples have receded a lot. I wonder if the Bumble and Bumble would help there? Thats actually where I am the most self conscious in the wind. So curious how it works. I will try it! And I…"
Apr 29
Mel replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"I also use castor oil on my eyebrows at night. I believe it HAS helped them to grow back some."
Apr 29
Mel replied to AnnieMay's discussion Still new to FFA. What are three positive things you do to help you look and feel better about YOU in the group Frontal Fibrosing Alopecia
"Thank you! By the way with the henna I order the "Malluma Kristolovino" which acts like orange juice or an acidic liquid. It gives my hair more brown color and less red. Works great on the grays too. You can also call them to discuss the…"
Apr 29

Profile Information

Relationship Status:
Married
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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At 11:59am on April 4, 2017, Sara said…
Does anyone Zljanz cut after casting her hair or fully these pills to treat alopecia
 
 
 

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