Dermatologist Appointment #1 Complete.

Hello again! Much thanks for the kind and supportive/informative comments!! I greatly appreciate them as well as making me feel welcome.

But let's get down to business...

Dermatologist appointment went well I think? I'd never been to the dermatologist before, but that's irrelevant. He initially asked an array of questions and then proceeded to take a look at my head. He went on to explain what is known about Alopecia, which sounded familiar having done some reading on my own. It was a fairly short visit, surprisingly, and the following form of treatment was prescribed...

Prednisone for 10 days, Olux-E [Clobetasol Propionate] Foam and Protopic [Tacrolimus] Ointment. The Prednisone is supposed to suppress my immune system and stop my hair from falling out. I'm not sure if I'm thinking of this accurately, but my theory is that it's similar to rebooting a computer. I read some of the side-effects the two main being Insomnia and Euphoria, which to me was mildly amusing. I work overnights right now and so I decided if I do happen to have this side effect it won't be that harsh? And the euphoria was funny because well, at least if my hair continues to fall out I'll be happy? Hm. Awake & Happy. But I'm only on the Prednisone for 10 days. 3 pills for 3 days, 2 pills for 3 days, 1 pill for 3 days and 1/2 pill for 4 days. The Olux-E Foam is going to be for the majority of my bald spots while the Protopic Ointment is only supposed to be put on a small section. Apparently there can be some effects that are not favorable.

I go back to see him in 2 weeks, May 21st. My parents are going to be in town, so my Mom said she wanted to go with me. [I'm guessing my Dad will come as well. They are driving up from California on their way back to South Dakota, which is where we're from and where the house is. They are currently working as Park Volunteers and living out of a 5th Wheel Camper. It's pretty cool and they're enjoying themselves!! Before California they were in San Juan Islands which is in Washington, but we were able to go visit them!!] I'm excited my Mom'll be there with me though, she's always good with questions, better than I am anyway. I felt slightly foolish for not knowing more about my heart condition, but I think that's due to the fact that my Mom has always been with me and knows everything!! [Of course, she's a Mom! Ha.] So I started the Prednisone today as well as the foam/ointment. The doctor, I can't remember his name currently, said that if the Foam/Ointment doesn't work we'll talk about Cortisone treatment, aka injections. I'm not sure how I feel about this...

Oh! Today Vanessa and I went down to the Saturday Market, which is a big market, obviously, with booths where random things are sold like crafts, food, clothing... A lot of home-made DIY type items. Well, we took the MAXX [public transportation light rail] and there was a man sitting in front of us who was bald, and we think had Alopecia Universalis. He didn't have eyebrows or eye lashes. It was just kind of ironic because we were talking about my Alopecia and if I'd ever shave my head. I don't mean this in any way to be offensive, nor do I want to come off as though I was gawking, but it was hard to not look because I want to say he was perhaps Asian, or Native American? And I couldn't help but wonder if I'd look similar to him bald, minus the gender difference and age. So this brings me to another question...

For those who have shaved your head before losing all of your hair, or just more in general, what made you decide to go forth and shave it? I'm considering the idea because, after having read around on AW, I've noticed a trend that many have shaved their head to evade the anxiety of bald spots showing... Or watching more hair fall out. But I worry that the back of my head is uber flat and is going to look obnoxiously flat bald. [I'm fairly certain it's a cultural Asian thing... I'm pretty sure the back of my brother's head is fairly flat back as well...] While Vanessa made a valid point, what if I shave my head but then begins to grow back? Then I'd have the long wait of growing it back out, all of it, not just the bald spots. I countered with the fact that yes, my hair may grow back but it could also just fall out, again.

So I'm wondering if Cortisone Injections are worth having done, if it's not a guarantee it will help. I just think that if it does come to that, and I were to get them, and they hurt a lot and are costly, and it does work but then my hair just falls out anyway... I really think I'd be even more devastated. Possibly more so than I already am that I'm losing my hair. I'm not sure if that makes sense... But any and all perspectives are welcome!! Onward to some photographs...

Here are some pictures Vanessa took this afternoon...

I part my hair to the right typically, and this began right at my part. It started off fairly small, but has grown in size, obviously. Vanessa used a quarter to show the size comparison.


And the back of my head... With the quarter on top! Ha.


Another picture of the back, from what I see I feel as though it's turning into one big circular bald spot... Although there are some forming at the nape of my neck and the top seems to be thinning...


Questions for those reading.
--- Has anyone else experience pain where hair is falling out?
--- My bald spots seem to be itching, is this normal? Or is my scalp just dry...
--- Has anyone else taken Prednisone? If so, experienced any side-effects? Did it work?
--- Any positive results from the Foam or Ointment?
--- Anyone who has had Cortisone Injections: What are your thoughts? Painful? Worth it? Expensive??

Thank you in advance to those who take the time to read this!! As well as to those who comment and are able to answer any of my questions!! I hope everyone is having a great weekend and Happy Mother's Day!!

Views: 796

Comment by Tallgirl on May 9, 2010 at 9:37pm
I had prednisone (which my mom talked me into doing 1/2 a pill "because prednisone made your grandmother's bones brittle," and I had cortisone shots in head, then in hip. Every place I had the shots, my tissue dented in (this went away eventually). The shots hurt, and I had no more than 6 per visit. Any dermatologist who wasn't sensitive to my tears we called names on the way home. My hair grew in in 3 months usually, but now I hear that it might have done that anyway. My hair grew in during my twenties, but after children and mother-in-law stress, it fell out again to become totalis, universalis, then totalis again. I gave up on shots and pills and creams, avoided appointments and pain, and decided to use the money for nice wigs until a cure that doesn't hurt or put chemicals into my body is discovered some day. Oh, yeah...as a child I also had tar shampoo, ultra-violet light treatments, and some cream for my spots (1960s). I use NOTHING now, and just throw on the wig for work and socializing. Free.
Comment by porcelinh on May 10, 2010 at 12:49am
I was on prednisone when I was first diagnosed with Alopecia. The same Px. It didn't work and I gained 10 lbs from it. That was when I was a senior in high school. My diagnosis was confirmed when the derm doc took a biopsy from my scalp and gave me the bad news that I will be losing ALL of my hair. My hair loss was quick. My hair thinned out so fast that, I became hairless in 4-6 months. That was the toughest time in my life going through my senior year in high school with Alopecia. Now, I'm over 30 and I'm still learning to live and cope with this disease. This is a great social network for people like us. Welcome to AW. Stay strong Ellen.
Comment by lynne on May 10, 2010 at 6:05pm
my head hurt alot wen hair was fallen out u know like after u've had ur hair up in a pony for the hole day, my head itched like crazy for few wks before mine fell out my mum kept checkin me for nits, lol, i have some regrowth for now and it stil hurts on my head in different area's on my head, not sure wen it stops, hope this helps, oh n it is normal for alopecia sufferers to experience pain n itchin x
Comment by Ellen Burns on May 12, 2010 at 7:55am
Thank you so much for the comments!! I don't think the Prednisone is doing much, but I guess we'll have to wait and see... I just feel as though my hair is continuing to fall out, if not faster than before if that's even possible? It's day 4 of taking the Prednisone and I'm now like, tapering off so I don't even understand how that would even do anything... As far as the foam/ointment, I just don't know. It's confusing and my head is super sensitive and newer spots are forming. Sooooo I guess we shall have to wait and see. Thanks again, and know that I appreciate your feedback :)

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