Had a HT - Now have an Autoimmune disease - need advice

[Nick33]

Well, to try to keep this short I'll give a short synopsis. Was going bald so at age 30 had a HT from a very reputable surgeon and loved the result. Was excited about my new hair, but then after a year I started to see my hair thinning. Not so much in the part that received the HT, but the rest of my hair. Was taking Propecia and using 5% minoxidil two times a day faithfully. Even started on Nizoral (at the HT surgeon's advising) and it just got worse. Thought I was going through a case of telogen effluvium, so I went to dermatologist. The Derm thought the same thing, until after a couple months it was still happening so she ordered a scalp biopsy.

 

After the biopsy, I was diagnosed with an autoimmune disease (cicatricial alopecia, AKA scarring alopecia) I am 33, and to say the least, this thing has really taken it's toll on me emotionally. I always hated losing my hair (which guy doesn't right?) and I actually did something about it. Was so looking forward to my second procedure before all this, now I am trying to think of options. I have been researching hair systems, but not a lot of options where I am from (Northwest Arkansas). If I were in the bigger city, I would have more.

 

I guess I am just looking for advice. I could always shave my head (but there is a scar back there now). I have read how a hair system is crucial to have cut in correctly, so I can't see how I can do that without a reputable salon nearby. Maybe there is, but I can't find any by googling them.

 

I am not after somebody just trying to sell me stuff either, I am looking for some real advice, from real people. I took 2 years researching HT surgeons and found a great one, now I am researching other options and expect to find something else that works well for me.

 

Appreciate all the help and support in advance.

[hadenough2014]

I am sorry to hear to hear your story. You did something to fight your hair loss and then nature hits you with second huge blow. Very unfair. You may look into SMP for your scar and shave or a hair system could be the next best choice. While it is an option, be careful about SMP and make sure you find a very reputable firm for that option if it is of interest. Best of luck to you.

[KO]

Sorry to hear this, are you not responding to the meds for CA?

[TakingThePlunge]

I'm very sorry to hear bout this. If it were me, I'd definitely look into scalp micropigmentation.

[Nick33]

hadenough2014 & David - TakingThePlunge - Thanks. yeah it's been a little tough. I still have enough hair to make it look pretty good (with some Caboki in the crown, but if this thing doesn't reverse then I will definitely be looking for an alternative. I have heard a little about SMP - sounds intriguing, but I guess I just don't want to do something that is a "fad" and in 10 years people will think is crazy. Having said that, I did reach out to a couple SMP clinics to at least get some more info. Any good ones you all have seen/heard of? My biggest concern is being able to cover up the scar. I have also thought about a hair system - but it seems like too much to do it. If there was somebody close that could do all the work I would consider, but not sure it would be right for me (although I think it could look really good since I have a lot of hair around my head and just the top is thinning.

 

 

 

KO - - Thanks as well. As for the meds - Dermatologists don't really know what to do with CA because it's so rare. Mostly women get it I guess. What's weird is that during my months of seeing the Derm...she actually got two more patients with the same diagnosis. Tells me that autoimmune issues are definitely on the rise. She literally printed a med regimine off of the internet and wanted me to do it. I did the first phase (clobetasol and hydrocoxyclyne (i think that's the spelling)) and all it did was inflame my head more and make it hurt. The next phase was going to require me to get an eye exam (she wanted to put me on plaquenil) and that freaked me out. The next phase after that would have been suppressing my immune system. It all really sounded odd and like they were shooting in the dark so I read up and learned that autoimmune diseases are a big black hole for most doctors. They only know how to treat the symptoms and not the cause. So I looked into functional medical doctors and I have been adjusting my diet drastically the past couple months to heal my gut and supply my body with nutrients. I've started to feel a little better, but the symptoms haven't really gone away yet. Head feels a little less inflamed though - but nothing to write home about. I am praying and believing that this works. If not, then I will have to take next steps.

[hadenough2014]

Hang in there. You sound very intelligent and estudious, so I am sure you will get to the right decision on how to handle this. It is interesting what you say about the increase of this auto-immune disease seen by your derm. Perhaps more people (especially those who have little of hair loss in their families) should be getting tested for the disease prior to considering HT. I realize it is quite rare, but as long as the testing is fairly minor, I guess I would do it before I jumped into a HT if my family history suggests I should not be losing hair.

[Nick33]

Hang in there. You sound very intelligent and estudious, so I am sure you will get to the right decision on how to handle this. It is interesting what you say about the increase of this auto-immune disease seen by your derm. Perhaps more people (especially those who have little of hair loss in their families) should be getting tested for the disease prior to considering HT. I realize it is quite rare, but as long as the testing is fairly minor, I guess I would do it before I jumped into a HT if my family history suggests I should not be losing hair.

 

 

Thanks for the kinds words. As for your comments for others to get tested, it probably wouldn't hurt. I was actually all set to go for my second transplant in October, but when I found out about this I had to hold off to see if it would stop. I was really bummed and have been looking forward to procedure #2 for 2 years now, but I definitely didn't want to do it knowing that it would risk the grafts both short and long term. At first I just thought it was telogen effluvium - but I could tell that the hair loss was more than normal.

 

Best case scenario - this thing stops and I get some hair growth back and I'm able to go back for procedure #2. I'd be elated if that happens...but taking it one step at a time and hoping for the best - preparing for the worst. But yeah, if somebody is going to get a transplant and has some type of inflammatory issue on their scalp - they would likely just be throwing most of the money down the drain. I am grateful that I at least had this caught first.