Replies to This Discussion

Permalink Reply by Classical Anne in NC mountains on July 4, 2014 at 9:32am

Hi Amanda.  I want to say how smart and brave you are to acknowledge that there is no total and permanent cure, and rather than spend money and time on medical intervention, you chose to accept it.  I do not have CCCA, but rather FFA which is another scarring alopecia, so I cannot answer your specific questions.  But I would like to say a bit in defense of the steroid injections.  Some people reject them based on the threat of "dents" on their scalp or forehead, or for a concern to add steroid to their system, or perhaps even in fear of the needle.  I started the injections right after diagnosis, and it is very clear to me that they have greatly slowed the progress of hair loss, in contrast to what others have reported without injections.  I have taken no other medicine for it, so must give full credit to the injections. Secondly, they are very superficial, low dose steroid, which I am assured has no systemic effect.  Lastly, the teeny needle used for these injectons feels to me much like maybe tapping your head with a sharp metal comb, with just the slightest force.  Occasionally one will strike an area that is more painful, but still very much bearable -- more indignant discomfort than pain.  And I've been getting 15-20 injections every 6 weeks for 10 months, and have only experienced one visible indentation, which is now about 1/4 inch wide and 1 inch long, and hidden under my bangs/fringe -- and am told it will disappear when the injections stop.  If you have chosen to do without altogether, I salute you on this 4th of July!  Just didn't want you to dismiss the injections without hearing the better side of their story, and knowing that they are the very least systemic of all the medical options.

Sorry you're having to deal with this condition, but glad to know you're facing it courageously.  Hope you get answers to your specific questions.  Best of luck on your alopecia journey.

Anne

Permalink Reply by MandaDeuce on July 5, 2014 at 2:34pm

Thanks so much for replying Anne! You really did help!! The dents from the injections are one of my biggest fears as well as only the hope of slowing down the hair loss. I'm glad you benefited from it! I have a lot to think about and fast! I'll keep you posted!

Permalink Reply by Debs on July 6, 2014 at 12:04pm

Please check out the CARF website, www.carfintl.org CCCA is a cicatrical (scarring) alopecia.

Cicatrical alopecia research foundation can give you help in educating yourself on your scarring alopecia. They have newsletters and run support groups in a few areas of the USA, I am in the UK and CARF are now active in the UK too.

CARF will be able to answer your questions.

Best wishes and good luck

Permalink Reply by MandaDeuce on July 6, 2014 at 9:06pm

thanks!! I've visited that site and many others.... I guess the only thing left to do now is wait and watch the process unfold... Thanks so much for your help!!

Permalink Reply by Debs on July 7, 2014 at 6:38am

Manda, i met several ladies with CCCA last November when i attended a CARF meeting in London, none of them had lost all of their hair, the hair loss is confined to the vortex area (what i would call the crown of the head) ladies with CCCA are usually of african heritage ( i am black british but have a different type of alopecia FFA) i noticed ladies with CCCA had braids then pulled the braids up into a high pony tail, this covered the area of hair loss. Other ladies were like me wearing wigs.

I think you need to find ladies with CCCA to answer your questions and also derms that specialise in the scarring alopecias.

The treatment protocol is basically the same for CCCA and FFA which I have.

HYDROXYCHLOROQUINE SULPHATE (plaquenil) an anti malarial tablet that reduces inflamnation.

TETRACYCLINE ANTIBIOTICS; doxycycline, minocycline etc

STERIOD LOTION; clobestol

STERIOD INJECTIONS

MINOXIDIL (regaine, rogaine) ladies can use the men's strength

ANTI INFLAMNATORY DIET: see Dr Andrew Weils or Dr Joel Fuhrmans websites

SUPPLIMENTS; ginger, turmeric, high dose fish oil, multi vitamin/mineral tablet

I can only advise you use whatever treatments both drug and holistic that you feel comfortable with.

Good luck and good health.

Permalink Reply by rikki on July 16, 2014 at 12:42pm

Hi Amanda, 

I also have CCCA. I was diagnosed last April and have been pretty stable. I have scalp injections every 8 to 12 weeks. I believe they've been helpful and with the exception of my last visit in late June, relatively painless. Initially, I was using Clobetesol foam daily but last November I was stable enough that my derm moved me to a milder topical that I apply 3 times a week. There are times when my scalp looks pink or red. I attribute that to flairs. At times my hair will thin in a certain area, but it has filled in after a while. Although a few places are still sparse.  I've also wondered if I should just shave my head and start wearing wigs but the hair loss is pretty minimal. 

This is such a frustrating condition and the doctors don't seem to know much more than we do. So much is still unknown. I don't know if this reply has been any help but please feel free to vent or ask me anything at anytime.  

Rikki

By the way, was your diagnosis the result of a biopsy?

Permalink Reply by MandaDeuce on July 20, 2014 at 3:25pm

Hey Rikki! Thanks for responding, you have been very helpful! And yes, I had a biopsy done. I've had previous patches before but they grew back, but this time I had a patch and thinning so I wanted to make sure it was or wasn't something major. The results were CCCA. Since my  post it seems that the thinning area is growing back but in comparison to my other hair that gonna take a long time to catch up. The patch doesn't seem to be growing in this time.  I'm using a lotion to keep the inflammation down.

How much hair loss did you encounter? The injections didn't grow the hair back did it? I was told it could only slow hair loss down in other areas.  Does your hair loss come in a cycle? Does it grow back and shed again?

Thanks again for your willingness to help me!