My experience with scarring alopecia - thoughts please

[butchered]

Hi all, here is my story experience of lichen planopilaris (scarring alopecia). Hoping to get some thoughts on what I should do next. I've posted before (http://www.hairlossexperiences.com/forum2/4859.html) when I didn't know what the condition was.

To recap, I first started losing hair when I was 17. When I was 20, in 2006, I had a strip procedure with 1000 grafts. Since then, I suffered from redness, bleeding and scarring of my scalp. Was this as a result of the hair transplant? I don't have clear evidence that it was, however, I do know the after care was very poor and I had extremely limited growth. I'm not on here to name and shame the doctor.

I left this for many years. I thought it was just a result of a bad transplant. I was also very embarassed, both at having the transplant (shamed by my unsupportive family) and at the condition of my head. I won't post the pictures again but you can see them on the other thread. It wasn't always like that, at some points it would look close to normal.

In December 2015 I saw a reputable hair transplant doctor who diagnosed it as lichen planopilaris. I decided to get NHS treatment to try to fix this, saw my GP and was referred to a dermatologist. I saw the dermatologist for the first time in July 2016 and she gave me Dermovate Scalp Application. I saw her again in September and last week where I was discharged from dermatology as it had been 'fixed'. Below are some pics of what it looks like now
Vertexes

Crown

But where do I go from here? I still have some hair loss (taking finasteride) and obviously have these large patches of scar tissue. I currently have the hair in the middle of my head quite long so I can brush it forward and have it quite long just behind the crown so I can do a dodgy combover. I've been cutting my hair for a few years after some bad experiences with a barber. It looks like this.

The for going outside I use a massive amount of hairspray to keep it in place...

As I continue to slowly lose hair it gets harder and harder to cover and I absolutely hate using the hair spray. Now hopefully the scarring alopecia is sorted and won't come back that will reduce a lot of the hair loss which will be helpful.
Interested in any thoughts on next steps and thoughts on what I can likely achieve. I'd be interested in another hair transplant, SMP, a wig (!!) or going cold turkey and just having short hair (don't think I could ever shave completely as my scar isn't great).
Think that's enough typing for now. Really appreciative of any thoughts or comments. Thanks.

 

[janna]

Hi Butchered,
Having LPP (lichen planopilaris) means you'll need to approach HT more carefully because grafts (hairs) don't grow in the affected spots. Did you have another biopsy that showed that LPP is no long present?
My experience with LPP is with Shapiro Medical. If a patient has LPP, they needed to be cleared of LPP for 2-3 years before grafts can be transplanted into it. This was Dr Shapiro's recommendation. I don't know if all HT docs have the same approach. You'll need to check back with the HT clinics to see what they recommend.
Best of luck.

 

[butchered]

Thanks Janna. I've never had a biopsy, just visual inspection under a microscope from the hair transplant surgeon and the dermatologist.

I understand about the 2-3 years...do you think it would be the same for SMP? Do you have any suggestions on small or big things I could do to make some progress with this? Honestly wish I was confident enough to just have it short and let the world see!

 

[janna]

SMP seems safer to do in the short term but I'd recommend doing a small test patch if you can get a SMP clinic to work with you. I wouldn't do the whole head until you're sure the ink isn't going to spread or change colour or disappear too fast.

 

[butchered]

Thanks Janna that's a good thought. Will need to do a lot more research on SMP as I know very little about it.

 

[Nightowl]

Is hair loss from Scarring Alopecia always permanent? My cousin has a small area an inch across that goes very thin at times, after several months it pretty much grows back. Then it will happen again. Could this be some form of mild Scarring Alopecia?
I think Janna has provided you with good advice, especially having a small test area first.

 

[Bastion]

You've taken the first steps having the condition diagnosed and treated. Now, you need to take your time planning your next step.
Good luck with it.

 

[Bigmac]

Good to hear the scarring alopecia is under control. Take your time now when deciding your next move.
All the best.
Bm.

 

[suzanahentin]

Thanks for sharing.