Comment

Comment by Halfbakedwho on January 24, 2019 at 4:09pm

Hi you guys and thank you for the support. I am still not at helper-hair-level yet. Had I a different hair type, I would be, but my big fluffy curly hair is a big distraction from seeing how thin it is in front and on top, and how it's gone on the sides. 

It's just in the mirror up close that I see the extent of the damage and where the hair will be gone in the next few months I suppose. Little red bumps around all my hair follicles on top, thinning, and the past couple of weeks - big cysts that are just bumps - nothing in them - they aren't zits or pimples, just painful bumps. 

I feel like I'm watching all of this go down with a more clinical, distant eye these days - almost like I care/don't care. Yes, probably denial. But I have so much on my plate - two cities, many different gigs going on, coming to the States (hi CurlyK) in February - my scalp is just not high on my list of priorities. 

Distraction and Denial - very helpful! Thumbs up, recommend. You don't have to credit me, even - I give you this method for FREE. You're welcome. 

Comment by Bloomingdalekid on January 23, 2019 at 4:37pm

Halfbakedwho, Have you given any thought to maybe “trying” helper hair now while waiting for your immune system to kick in?  I suspect you will feel a lot better about yourself and maybe help you accept this AWFUL condition.... your hair isn’t going to grow back - so what you have lost is gone.....  Just a thought.  I know my self esteem took off in a positive direction after I got helper hair - I can’t even imagine NOT having it now..... I will NOT let this disease define me and make me want to crawl into a corner.  

Comment by Kandy15 on January 23, 2019 at 2:07pm

Halfbakedwho,

Yes, this is the most weird and upsetting condition ever.  I wish there was a pill we could take that would make us better.  This trying a bunch of different medications just hoping for the end of the progression of it is so exhausting and causes so much anxiety and depression.  I know I am heading for helper hair before too long as well and am trying desperately to get to the acceptance stage of it.  What else can we do?  I started Plaquenil a few weeks ago which is a new medication for me.  They say it suppresses the immune system but takes 6 months to start working.  In the mean time my hairline just keeps going back and I feel so helpless. 

Hugs  

Comment by Halfbakedwho on January 22, 2019 at 4:23pm

Thank you Kandy

These days my scalp is really a mess - worse than it’s ever been since I first noticed my hair loss, or since my diagnosis in 2017. I have many little inflamed red spots around my follicles, and now I get the occasional big cyst that hurts - second one in as many weeks. 

Tonight I’m in a hotel, where the bathroom light is different and stronger and I can see the extent of the inflammation. 

I am pretty much resigned to getting helper hair in a year or two, but it doesn’t make my scalp feel any better tonight. What a strange icky problem this is... But no I still don’t want to take Finasteride. I started up my low-dose antibiotics again instead. Like that will make any difference. : / ! 

Comment by Kandy15 on January 22, 2019 at 11:46am

Halfbakedwho,

I have tried finasteride and did not have good success with it.  After 12 days I started to have a horrible burning sensation in my scalp.  It would come and go all day and even woke me up in the middle of the night. (I don't sleep well anyway because of the anxiety and depression that I have with this condition so I need all the sleep I can get.)  I stopped taking it and it took 4 more days for the burning sensation to go away.  I was terrified that all of my hair would fall out but that's been 6 days ago and I still have what's left. thank goodness.  I must have had an allergic reaction to it because my lips, face and gums felt numb for a few hours on Saturday.  Everything I have read say that there should not be any side effects and that it is something that stops FFA progression.  It just wasn't going to work for me.  Reading through the comments and discussions on this site it looks like there are several gals who are trying it and have been on it for a while with no problems.

Best of luck in making the right decision for you.

Hugs! 

Comment by Halfbakedwho on January 17, 2019 at 3:04pm

thank you both!! 

I am so excited to go into the sun! I am feeling a bit blobby - so much work and no time (excuses) for exercise. I am looking forward to a break already (after two weeks vacation X-mass/NewYears...) 

If there are any other products or things that you use that I could find more easily in the States, please share! Thank you again. 

Comment by Mary on January 16, 2019 at 9:35pm

I avoid sunscreen and found a company called Sun Precautions which markets a really useful clothing line, including swimwear, made with high SPF fabric.  It was developed by a physician for people who are extra sun-sensitive due to either medical conditions or who must avoid sun exposure because of certain medications, e.g. amiodarone (a cardiac drug).

Comment by CurlyK on January 16, 2019 at 7:44pm

Halfbakedwho - as you know, I live in Flor-ee-dahhhh and I still wear a foundation that has sunscreen in it. I just have to. However, the only time I slather sunscreen on liberally is when I go to the beach or am out by the pool. I use the safe sunscreen that doesn't have all the bad junk in it and fare just fine in the sun. I also have a big hat to cover my head/face/neck as well. 

I was itchy for a while a month or so ago but it's gone now. I chalk that up to stress. The heat of Florida doesn't bother me so much or irritate the FFA, but then I never had a lot of itching or other symptoms other than the hair loss. Could news is, HBW, February is GORGEOUS in Florida. IF it gets up to 80F that would be a miracle!

Comment by Halfbakedwho on January 16, 2019 at 7:54am

I know I'm feeling a bit more touchy about my appearance because I'm leaving for the States soon. I have been shedding a lot of hair recently, and who knows why? But I noticed that there's overall thinning on the top of my head. And my eyebrows are starting to get thinner at the outside. 

So I would like to know - when in Florida, given we are now supposed to avoid sunscreen, what to do? Obviously a hat, but if you have other ideas, please share. 

CurlyK - you had mentioned once that you were itchy and your scalp felt irritated - was this resolved? I know you live in Florida, and I hope I feel okay there. I have the impression that the heat isn't helpful.

However in other news, I got my highlights done, and the girl reassured me that my fluffy hair still is covering the obvious loss. 

So keep on truckin' - like it's 1975. ; )

Comment by illustr8r on January 16, 2019 at 1:11am

A half day of hot flaming red ears! Most times it’s just one ear but today it’s both. I looked up red ears and it’s a syndrome and can be caused by many things...most of it rare and autoimmune related except if you get it from a sunburn. Great.

https://www.medicalnewstoday.com/articles/320344.php

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