Alopecia World
www.alopeciaworld.com
LPP & FFA
Hello everyone,
I am new to this site. I just found it yesterday. I am 61 years old and was diagnosed with LPP about 3 years ago. The derm put me on doxycycycline and clobetasol foam. I took it for about 8 months until it gave me severe stomach upset and I ended up in the emergency room of the local hospital. The rash I had was all around my head from ear to front forehead to the other ear. By the time I went back to the dermatologist I had really bad hair loss from my temples to my ears on both sides but the front hairline seemed fine. The doctor took me off of the doxy and clobetasol and told me that the LPP seemed to have gone into remission so he did not offer any other treatment plan. My long hair was able to hide the awful effects of hair loss so no one knew but me. After about 8 months I started to get the rash back again so off I go to see him. He put me on a lower dose of the doxy than what I had been previously taking and back on the clobetasol. I didn't see any improvement at all. He recently left the practice so I am now seeing a different PA. I went to see her in November 2018 because the rash was starting to get really bad on my front hairline - FFA - and my hair just staring to disappear there. She gave me a prescription for topical tacrolimus and cut the doxy down to just once a day. It just got worse and worse, more hair loss, I'm freaking out, so about 6 weeks after I started her treatment I went back to see her and told her it wasn't helping. I am now on hydroxychloroquine and 5 mg finasteride which I started about 2 weeks ago. She said it will take a while to see results and I go back to see her in 3 months. She also cautioned me that there is no cure and that everybody responds differently to treatments. I knew that because I have done a ton of research. I also started a diet free of gluten, dairy and sugar to help with my immune system. I've been doing that for 4 days now.
So that's my story. I recently had my hair cut up to my shoulders with bangs and lots of layers. I am totally so depressed about this condition and I can see that all of you on this site are as well. I am constantly pulling my bangs back to check out my forehead throughout the day. I have read so many uplifting posts on this site and I am so thankful that I found it. I know that we all wish that we weren't in the chosen few who have to deal with this for the rest of our lives. I pray all the time that someone will find a miracle cure so we can find the joy in our lives that we once had. We are so used to taking a pill when we get sick and start to feel better in 24 hours. I wish it worked that way for this.
Blessing to all of you who have been so brave to share what you have going on now and have already been through.
Replies to This Discussion
-
Permalink Reply by BubbaLu on
-
Kandy15,
I’m not sure if any topical cream or steroid helps at all but I do use CBD tincture based in grape seed oil on my hairline. It helps moisturize the itchy area and I am starting to see some new hair growth. I take hydroxychloroquine as well and have for over 8 months. I feel certain it is responsible for the bumps drying up but now I have itchy flakey skin along my hairline. But the new growth is encouraging. My doc is monitoring my blood levels every 6 month and eye doctor said the low dosage I am on should not effect my eyes. I, like you, look at my hairline too often.
Welcome me to the site, on days when I’m down it is somehow comforting to read what you girls post and feel like I’m not alone.
-
-
Permalink Reply by 2Dachshunds on
-
Dear BubbaLu: question on the flakey skin, when I look in my magnifying mirror, I see silver like patches around each hair folicle. If I scratch them they do come off, is that like what you see? I'm also doing CBD oil and also the salve which helps the red patches and sometimes calms the itchyness.
-
-
-
2Dachsunds
I only have one area about the size of a dime that looks silver. The rest is just dry and flakey. I try not to touch it but sometimes I give in and gently scratch. It looks like dandruff. Then the skin is red underneath. Disgusting
-
-
Permalink Reply by Bloomingdalekid on
-
So glad you found this group. There are a lot of amazing women here. Very supportive and understanding along with being empathetic since we all suffer from this nasty disease. Don’t be afraid to ask questions.... we all have made different choices - drugs, no drugs, toppers, bonded pieces, microblading eyebrows, or just great moral support. Welcome!!!!
-
-
-
Kandy15: Sorry you have been through the wringer. I used topical tacrolimus but I think it made things worse, at least more itchy, so I would alternate, one night the tacrolimus and next night CBD oil or salve. Then I went to Europe for a week and came back very itchy. I got another round of steroid shots on my hairline that seemed to help. Now I am just using cbd oil or salve each night.
Im going to try some green shakes that are anti-inflammatory and hope those help the itching.
-
-
-
Awe, thanks for all of the support. I have been doing some research on line about the CBD oil and I'm not sure what kind to ask the doctor about. I am in Florida and they recently opened a dispensary in my town. It looks like I would need to get a medical marijuana card in order to get it in this state. It's encouraging if it is helping some of us gals. I'm willing to try anything. I have been having a lot of anxiety about what my future with this holds since I just don't know how much hair I will loose. I haven't been sleeping too well so I called my regular physician to make an appointment to talk to him about how I'm feeling on the inside. Hopefully he can give me something to calm me down. I have been isolating myself from people and activities that I used to love. I love to do Zumba and have been going for 7 years now, but I've stopped because of how my hair looks. I went to the local wig shop to "get prepared" for what's coming and I asked the lady that was helping me if I could still do Zumba with a topper when I get to that point. She told me no, she didn't recommend it. So I'm sad that my life is changing so much.
-
-
-
I'm sorry you feel that way. My bangs are long enough to cover my loss right now but I pull my hair back when I workout and I can certainly see the loss and was upset about it. What I have realized is I dont want to put my life on hold because of my hair. Dont get me wrong it is and continues to upset me a lot and I feel embarrassed and despair when I think about it. But I must exercise because that makes me feel a bit better! Try some of those sweat bands or thick headbands. My head just does not keep those in place, they slide off, so I try to strategically place bobby pins. Go to Zumba and sweat it out, you will feel better I just know it!
I understand feeling sad and I empathize with you. What helps me is to hug my doggies and go for a walk outside, work out, have lunch with a friend, some ideas!!!
Hang in there, virtual hugs to you!!!
-
-
-
Kandy, I have not ventured into helper hair yet, but I have heard others who wear toppers talk about exercising in their hair. They talk about using their older toppers to exercise in and saving their new toppers for when they won't be sweating so much. So though I can't speak from experience, I wouldn't rule out the possibility of resuming Zumba while wearing a topper. We definitely need to find ways to keep going with what we love in life and what makes us feel good both physically and mentally. Not easy, but it is the only way to win with this lovely disease that we have all been gifted.
-
-
-
Hi Kandy. Is it possible that the woman at the wig store suggested NOT wearing the topper because of the jumping that goes with Zumba and the possibility that it would pull on the topper, which, in the long run, could cause traction alopecia? You might want to ask. Also, perhaps a solution to wearing the topper so that it doesn't pull during exercise is to wear a cute bandana to keep the topper tightly in place on the head so the clips don't pull on the hair that is left. Just a thought - certainly I am no expert at this!
-
-
-
Thanks for all of the great suggestions about the toppers. When I get to that point it will definitely be something to try. I looked online about how to get a medical marijuana card in Florida so I can buy CBD oil. They are only given to people with debilitating diseases such as cancer, epilepsy, seizures, Parkinson's, etc. I can get the CBD oil made from hemp at health food stores but have read that it doesn't have the medicinal value as CBD tincture, which seems to be what the gals on this site are using. Has anyone used just the hemp kind with good results?
Also, I am taking 5mg finisteride that I just recently started. The past few days my scalp has a terrible burning feeling that comes and goes. I didn't take it this morning because I wanted to reach out to women on this site to see if they are having the same reaction and sensation. Any advice would help me to determine if I am going to stay on it.
Thanks all!
-
-
-
I have been using CBD oil in tincture from the brand called Ananda. They also have a salve that I use too and it helps. It is my understanding that CBD is legal in all states. I also have read that CBD helps calm inflammation better that THC. CBD is from hemp and where they grow it they are required to keep any THC levels to a bare minimum, the bottle says 0.03%. I get mine from a drugstore in Arizona https://www.rxlab.com/ and they ship to other states. I also found info on brands that are vetted I think by a lab and Ananda is on that list.
-
© 2024 Created by Alopecia World.
Powered by
