Update on update re: Relaxer-scarred scalp

[Blu217]

I'm starting a new post on this because what I just learned about my treatment for hair loss due to a diagnosis of scarring alopecia has me absolutely SICK to my stomach. I hope others might learn from what I'm experiencing right now, trying to treat this problem.

When I saw the dermatologist on 9/15, she administered about 10 shots of Kenalog, a corticosteroid, to my scalp in the areas affected by the hair loss. I didn't know the name of what she was using, but I THOUGHT I had already done some thorough research on cortisone shots in the weeks prior. I thought I knew what I was doing by getting these shots. I got some positive feedback on how quickly they can reverse hair loss and allow regrowth by driving away the antibodies that are attacking the hair follicles, by thinning the scar tissue that may be preventing hair growth, etc.

It's now almost two months, and I saw her again on Friday. Thursday night I ran my hand thru my hair and noticed a weird, large divet on my scalp, the size of a thumbprint. It was sore. I Googled, but didn't find info. When I saw her the next morning she told me it was a minor side effect of Kenalog shots. She told me to give it a few months to fill in. Then she continued her exam of my scalp and said she'd like me to have another shot, this time in the buttocks, to reduce the redness and inflammation of my scalp from the divet and other irritation she suggested was from stretching my relaxer. She made it sound like the 2nd shot would help with the issue from the dent and the irritation, so I said OK. They mentioned the name "Kenalog," and I decided to Google it. I also got home that night, parted my hair and with a magnifying mirror could actually SEE the indentation in my scalp! And to make bad matters worse, it's freshly bald right inside the dent. This was supposed to GROW my hair, and instead it's making me lose more of it???

I am horrified by what I've read after Googling this. The side effects of Kenalog include tissue atrophy from the needle not being inserted properly; this could reverse within a year or it may never reverse. I then found the Web Forum from Hell, where hundreds of people who've had these Kenalog shots talked about horrible disfigurements to their rear ends a few months later that are visible outside their clothes, menstrual periods that go on for months at a time, HAIR LOSS and doctors who are uninformed, disbelieving or attempting to correct the golfball-sized disfigurements with collagen shots.

I let her inject me for a 2nd time only 2 days ago. I didn't understand all this. No one told me of the potential side effects--and if I recall, I did ask at the time I got my first round of these shots back in September.

My hair is so thin already, and as I sit here typing this my scalp is itching and burning like I had a bad relaxer--another side effect I read about from this shot. As I ran my hand through my hair just now, I found another dent.

I'm terrified about what the next few months will bring. I regret EVER having these shots, and as someone who always tries to be super-informed, I feel like I seriously dropped the ball here. I feel like my derm knew when she was looking at my hair, but didn't want to alarm me because she seemed to gloss over what looks to me to be quite serious. These dents HURT! These shots can melt away your tissue--and that may or may not fill in, and if it does odds are it won't do so completely?

I thought this was a simple cortisone shot. I thought I did my homework and was an informed patient--I'm always the informed patient. Now I don't know what to think.

 

[amy1234]

I'm so sorry that this is happening to you!!!
I don't know what else to say

 

[Blu217]

Thanks; there's not much to say I guess. I don't think I'll be seeing that doctor again; I'll stick to natural methods, vitamins and give this to God from here.

A lot of people get these shots for everything from allergies to eczema to arthritic pain; they're extremely common. I got them for hair loss and scalp irritation--the side effects are the same.

 

[preciousjewel76]

I'm at a loss for words too! Like you, I try to be an "informed patient", but it can be difficult. This just goes to show you that while physicians are fantastic in lots of ways, they don't always know what's best for us. I really do wish you the best in your journey for better hair health. My prayers are with you!

 

[patient1]

Man, my heart really goes out to you. The good thing is that you found out now before you continue on with those shots. I know folks get tired of me saying it, but I'm sticking your name/situation into my God's stuff jar. When I've got an issue that's too big for me to even wrap my mind around, I try my best to give it over to the universe. Not always easy when it's something personal, I know. But what's the harm in me writing your name and situation on a piece of paper and dropping it into my jar?

I'm a believer in miracles.

p1

 

[caribeandiva]

gurl you got me biting my nails while reading this. i feel bad you're going through this. please keep us updated on your findings.

 

[Minx]

Hey, Blu, it's me, your sidekick!
You know I chime in whenever you post.

But hey, it's not just you; I have those dents, too!
And like you, I was not told that they were a possibility.
I read about them later.

I found mine when I was parting my hair one day to oil my scalp.
As I ran my fingers across my scalp that's when I felt them.
I was like, What in the world!!!???Do I have dents in my scalp?

So I went to the bathroom mirror to take a look and sure enough, I saw the dents in my head. Like you said about the size of a thumb print, in about three places around my head.

I only went for the shots three times and I have not been back.....

dk

 

[lovelymissyoli]

I pray that things will work out for you, and the previous poster (dkbeauti).

In the meantime, have you researched what can be done about the dents (not more shots), but is there a possibility that they will heal as time goes on?

Also, what caused the scarring alopecia if you don't mind me asking?

 

[Blu217]

Thanks to everyone for your support.

Dkbeauti--YOU TOO??? How long ago did you have the shots, and how long before you noticed the dents? Have they filled in any? Did they/do they hurt? I've been finding new ones, too. I'm just so glad someone else here understands this and... I'm not AT ALL glad you've experienced it, Dkbeauti, but I'm glad we can at least share this unsettling experience and this journey.

The scarring, I'm told, was caused by a chemical burn. I don't recall getting a relaxer that burned me so severely, but the doc said it could have been from years and years ago with the effects only showing now. I used to scratch my scalp with rat-tail combs, pencils, etc and she said that might have done it too. The thing is... I began losing hair during a period of extremely high stress; I'd never seen any hair loss before. To me the stress, which made me physically sick as well, seemed to correlate most logically with the hair loss. But the doc biopsied and isolated out a bunch of issues like lupus and a variety of fungal and bacterial problems. She said the results showed moderate scarring present.

I lost my hair, then it seemed to fill in, then it came out even worse. I remain hopeful that the prayers, and that prayer jar are gonna be heard and I'm gonna get my hair back... in a few years. I'm giving it that long. Meanwhile I've reached a goal length of just past bra-strap and as exciting as my new length is (I'd stretched for a couple of months), I just wish I could enjoy a thicker head of hair along with it.

 

[Minx]

Ummm, let's see:

I got the shots in Feb, April, and June.

I don't remember exactly when I noticed the dents, but it was like, boom, up-jump-the-boogie, and there they were!

They don't hurt. Just feel strange to the touch, and you can't really see them unless you part my hair and go looking for them. Even when I wear twists, you can't really tell.

You know, Blu, sometimes I just stop and laugh at myself (I have to laugh to keep from crying).
I'm like, "Lord have mercy! Me and this head of mine" I have put it through so much over the years, I don't blame it for rebelling.

How bout, I was researching hairloss the other day and statistically speaking, of all the people that suffer hairloss, only 3% suffer from scarring alopecia!

We are in a small boat.....

As far as how my scarring occured, all my Dr. said was "hair practices".
I was like, "Okay???"
Well that could have been chemicals, braids w/ extensions, cornrows w/extensions,wigs, weaves, whatever.

I usually only relaxed three or four times a year, I'm a 4a/4b.
I didn't like dealing with my hair, never have.

So I wore alot of ponytail clip-ons...... for years. I was pulling my hair tight in the top to get that slick look.

Not only that, my sow in weaves that I LOVED, were done very tight.
That lady would braid my hair around my head so tight, it looked like stitches! But once she sewed that wet and wavy hair in, I just knew I was cute.

Once, I had too tight cornrow extensions, to the point were I was crying. I experienced this once back in '04. I had them done for the beach. We went for four days and I couldn't even get in the water cause my head hurt so bad. I was popping Advil the whole time and rubbing Neosporin on my scalp cause I got little bumps from those things.
Took those out in about two weeks.

For the past two years, I had been wearing wigs, or half wigs with the comb attacthment in front. That comb was pressing into my scalp
and laying against it all day.
It would be so irrated by the time I got home and took it off.

And from what I have come to learn the wigs probably rubbed out some hair in the top, as well.

So with me, there's no telling. I was just so lazy and ignorant.

But like Iyanla Vanznat said, "When you know better, you do better"

So that's where I'm at today.

dk

 

[blac_quarian]

Blu (and dk too): I am so upset hearing about your discovery regarding the side-effects of the cortisone shots. I can't imagine how panicked you must be feeling. I will keep you in my prayers. When my daughter was 6, she had an episode of patchy hair loss and trust me, it was extremely gut wrenching for me as a mother to see it go down. Thank God it wasn't permanent and the hair loss was reversed with minimal medical intervention. I would encourage you to research natural treatments. Remember to maintain a positive attitude at all costs, and of course you can always vent if need be on LHCF. Keep praying girl.

 

[Blu217]

Thanks, Blac quarian. Yes, I'm sticking with natural remedies from now on; I'm kind of excited to get back to my vitamins and topicals. The shots DID help the irritation and the soreness on my scalp. But I have to wait and see on what the price for that might be, if any.

dkbeauti, I read about that 3% too. My hair story is I got relaxers every 6 weeks or so--whenever my new growth got too thick to comb thru. I wore my hair down or in loose ponytails at the base of my neck--people frequently told me I needed a hairstyle because I've always been neat, but unfussy about my hair. I never wore braids, weaves or phonies and I'm a faithful rollersetter--I don't own a blowdryer, flat iron or curling iron. I never stressed my hair or scalp in any way I know of, other than scratching my scalp when it itched. Didn't use a lot of products, didn't smooth edges or wear my hair tight... Like you, I never liked fussing with my hair. I just made sure it was nicely rollerset and beyond that, it could do whatever it wanted. If it behaved it enjoyed a big day out. If it wasn't cooperating, it went back into a ponytail. I thought I kept things pretty simple and treated my head and hair gently, and dang if I'm not in the 3% anyway. Kinda makes me feel helpless.

Did you say whether your hair has regrown any since your diagnosis?

 

[zailless]

Hi,
I can imagine what you are going through. I have bald patches and it affects my social life. dont even want to ddate. I am sorry you didnt find out about the shots before. When I went to to the derm, I refused the shots and opted for the cream, i didnt know the shots could do that.
First of all let me say that you can completely manage this thing. It does make you feel helpless and panicked but its manageable. your first job is to relax yourself as much as possible, destress and continue to follow the natural path you have chosen. I bought relaxation teas and a detox tea. I would suggest using castor oil with essential oils on your hair. Castor oil has healing properties from the rinoleic acid. I bought the quantum castor oil that is rich in the rinoleic acid. it feels warm when you apply it to your scalp. the castor oil has helped with my scalp issues. i added tea tree oil mixed with lavender from gnc to the castor oil. it calms the scalp down when i get flare ups and the thick red bumps. For 2 months i got these hard paiinful bumps but for the past 2 weeks my scalp has calmed down. I went one week without washing my hair for the first time without any issues. i had to wash it every day. I hope there is some information in here that helps. I also prayed alot. I forgot to mention that my scalp has begun to show hair.

 

[Minx]

Blu,
Sounds like you were better to your scalp than I was to mine!
From what I have also learned, Dr.'s don't know FOR A FACT why this occurs. Often times, it is hair practices, but sometimes it's not. It can happen to anyone. Allergies to something, whether topical, evironmental or internal, can cause it as well.
C'est la vie!

But as far as regrowth, I have more hair now in the crown than I have had over the last year and a half.
Its soft, coily, and very short.
It's not as sparce as it one was, it's filling in from the outside, inward.

I'm just am glad that my scalp is no longer "slick as a baby's bottom" like it was at one time, so there is hope.

But it looks like it will be a slowwww process.

I can't remember who it was, but one lady on another site said it took her a full 6 years to recover from this thing!
Again, she, like me, had complete baldness in the crown.

You know, it's so funny to stand in the bathroom mirror, holding up a hand-held mirror, and looking at my hair from the back/top and finally seeing hair there! I can't believe it's my hair!

But then again, it says in His word "Ask an ye shall receive", so I guess I shouldn't be surprised after all!

dk