Comment

Comment by MO gal on May 29, 2008 at 6:45pm

Hello Mandy!
Just wanted to add to your blog a piece of adivice. I got the shots also. Now I have cataracts on both eyes from the steroids. I am now getting DCP treatments that is drops and non harmful to any part of your body. Its totally safe. I have had great regrowth from it but its hard to find. I just happened upon a derm. that treats AA successfully. (at least so far) He has had several patients with regrowth and it hasnt fallen out but once and it came back with more treatment and hasnt fallen out since.
Do some research on DCP treatments and see if you are interested.
Best of luck to you!

Comment by Zoey on May 24, 2008 at 3:30pm

Hia Mandy.. Years ago.. When I was 25 I got injections in my big spot.
I do not want to be negative, but it didn't work for me.
What it ended up doing is giving me a huge indent in my head..

So now that I am completely bald.. It looks really funny.. Thats why I always wear scarves.
I wish all the luck to you. I agree with the others. I would maybe let them just focus on one area and see if it starts to regrow. :) Do they put you under the heat lamp too? That always felt soo good to me, to get some heat on my scalp.
Keep me updated on how everything is going.. Be strong we are all here for you...

Muah Zoey

Comment by Zoe Dusting on May 22, 2008 at 3:35am

Hi Mandy!
I've had injections A LOT of times. They definitely don't have to inject all of the spots. You of course can say stop as soon as you like! I know that they are painful but it only lasts for a couple of minutes so why not give it a try? My hair always seems to grow back a couple of months after the injetions. Wheter or not this is from the cortisone i'm not sure? I've had lots of the denting but if you just try and not focus on the dents they disappear before you know it. I'm going to get some more injections on monday actually. I've gotten to the point now where i am able to calm myself down before i get into the dr.s office. Just take big big breaths and squeeze something really really hard. haha. Anyways good luck Mandi!!

Comment by Drew on May 21, 2008 at 8:42pm

Mandy, I find myself in the same situation as you and even though our situations are very different I'll tell you how I feel about it. I keep leaning towards not getting the injections anymore. I'm just not sure they are working. I mean yes, I have had growth in one spot (the original) but since the little growth I have gotten I haven't seen anything else. And the disease continues to spread. Some time it will come to a point when I just need to gain control of this, and I think I am at that point and can gain control with a razor haha. But like I said its different for everyone. Go with you're gut feeling and dont be afraid to talk to your doctor about your thoughts. Good Luck, keep me posted on what you do.

Comment by Emma on May 21, 2008 at 5:22pm

Hey mandy, i have never had those shots but i have been through DCP treatment, remember going to my first treatment and was in the hospital going to the appointment and my feet wanted to turn around and walk away but i told myself that it was worth trying i feel anything is worth trying however if you feel it is too much i would say there are other treatments so ask about them and even if the success rate is not that high give it a go anyway you never know you might just have a success.

Comment by Mom on May 21, 2008 at 12:01pm

Hi Mandy, My daughter who is 12 and also on your friends list.... She did try and keep up with the shots but we felt it wasnt working enough and hurt too much too continue. I think the injections work well if a person say only has one or two spots. In my daughters case, her loss progressed over about a year to the point of us having to order a wig and we just had kind of a wait and see thing... In Feb I will tell you the daily torture of all the hair everyhere, the new areas of loss the fact that she couldnt hide it anymore was too much.... We did receive a beautiful human hair wig, has it cut and ready and she decided to shave her head. It was kind of a turning point in her young life, in a crazy way she kind of took charge, not waiting and wondering anymore, It was a relief for her and the whole family, she told her friends and it was like turning a corner and moving forward. The wig looks close to her own hair, and you can not tell it is a wig. There are great options out there, there are tapes, waterproof tapes, glues etc.. she is very athletic and it had never been a problem for her. And now if her hair grows back it grows back, the whole crazy rollarcoaster is kind of leveled off, she is doing alot better and in the morning we tape on her hair and off she goes! You sound like you really are doing well already with this already so after I have rambled on here, I would say the steroid shots are not always the answer. Amy

Comment by willow on May 21, 2008 at 11:13am

Hi Mandy, I've had alopecia universalis for 38 yrs, i did 5 yrs of shots. I recommend you get the doctor to shoot all the bald spots, and even where it may be thinning out. This is what I know. I had alopecia for many many years prior to finding a doctor who knew what to do. By that time, I had been totally bald for way too many years. The shots are only deposited between the layers of skin, and yes, the divets will go away, and lets face it, if your hair grows back, who cares if the divets stay or not, no one will ever know. The faster you get these steriods in your hairline, the less chance you have of becoming full blown alopecia universalis. Being fully bald, the doc put approximately 100 shots in my head every two weeks, and I did not find it was that painful, and even then, a bit of pain, to have a full head of hair is well worth it. The doc can put a bit of Elma cream prior to injecting, and that will freeze the skin a bit. I highly recommend it, its the most successful treatment so far.

Comment by Joel on May 21, 2008 at 9:19am

Hi Mandy. My experience with the shots showed only temporary improvement. Unfortunately your blood cells are "fooled" for a short period of time but they recover their "memory" (this is in my case) shortly thereafter. Try it but don't count on this treatment for the long term.

Comment by 3mee on May 21, 2008 at 7:32am

I had AT, so the dr gave me more than 30 shots on the whole head. Its really painful!! Unfortunately, after taking all these painful shots for 3 months, I found out that the dr is not qualified. I was teriffied and start seeking for another qualified dr. My hair grow back but now, it started falling again.

I can imagine how you feel now and am sorry for that.

Comment by Tony on May 21, 2008 at 6:13am

Hi Mandy,

I did shots the first time around many years ago. I had half the spots done on the first and only visit. I'm not sure if it was worth the effort. The hair eventually grew back...the spots that weren't done grew back shortly after the ones that were. Don't know if that helps...please know that our thoughts are with you.

• ‹ Previous
• 1
• 2
• Next ›
• Page