Atlanta Doctors??

[Glenda]

I have been going to Mayo Clinic for the last 3 years for lichen planopilaris. This was a last resort after going to several derms in the Atlanta Metro area that could/would not take my receding hairline serious. Mayo Clinic has been great and are the ones that diagnosed my problem. Since it is about a 7 hour drive needless to say it is getting old. I only have to go every few months but I would like to find someone closer to home.
The only medication that has worked for me is cyclosporin which is a very powerful drug. When taking it I have to get blood drawn once per month and have blood pressure checked 1+ times a week. So far my primary care doctor has done this and forwards results to the Mayo. This works fine until it is time to readjust the medication. Then the doctor at Mayo needs to look at the scalp before changing the dosage, etc. It gets to be kind of cumbersome.
I have made phone calls to various doctors inquiring if they have experience with the condition but they always want you to come in first. I don't have the financial resources, time or emotional strength to be going to doctor after doctor trying to find one that is even familiar with the condition

Has anyone had a positive experience with a doctor in the Atlanta area that has treated lichen planopilaris or a similar condition?

Any information or leads would be greatly appreciated!

[kellyjean]

Have you tried Emory?

I don't really know what lichen planopilaris is, but if it's dermotological, I would assume Emory would be a good bet. I'm meeting with Dr. Mackelfresh on the 28th, so I'll see how it goes. Make sure you don't get Dr. Sheila Mayo, though. She's only a physician's assistant and couldn't even get my stitches from the biopsy right.

:/

[Glenda]

Kellyjean:
Thanks for the response. Lichen planopilaris is another name for scarring alopecia. I have not tried Emory but I believe I did call them a couple of years ago and they were one of the ones that could not answer my inquiry. By that time I was frustrated and decided that I was just going to Mayo Clinic where I know they are good. I have been through their clinic for other things over the last 15+ years.
Keep me posted on your experience at Emory and I may give them a try.
Again, thank you for the information.

[kellyjean]

I will.
:]
I can ask Dr. M if she's familiar with scarring alopecia while I'm there and let you know.

[mopy]

Hello Glenda,

I too have LPP, and can understand what you are going thru. I currently go to Mayo Clinic in AZ. I had a doctor at Mayo that moved to Atlanta, and he has remained a close friend of mine. He is very familiar with LPP, and he knows hair and scalp issues very well since he had the extra schooling for hair restoration. He is from France so he also is affiliated with the French Society of Dermatology, so he has the knowledge of European medicine as well. His name is Dr Firas Hougeir and he works for Family Dermatology, and you can contact him at 770-921-4300. I highly recommend him. If you go to him you can tell him Lucy referred you. In fact, if you need to see him right away you can just ask to talk to a nurse and then tell her what you have and that you need to see Dr Hougeir asap. Also tell her that I recommended him and I'm a close friend of his and that should get you in. If you let me know I will also tell Firas about you so that way he can tell his staff so when you call they will fit you in without waiting.

There is also Dr Wesley S Wilborn and he serves on the board of directors for the Cicatricial Alopecia Research Foundation. I highly recommend him as well since he would have all the knowledge on current effective treatment and also research. You can reach him at 404-659-1795.

How has cyclosporine been working for you? I started plaquenil 4 weeks ago and was taking steroid injections but treatment needed to be more agressive so I started on prednisone 5 days ago. It's a 3 week course. Hopefully after that the plaquenil will work; however, if it does not then I will ask to go on cyclosporine since I've heard that it's very effective. How long does it take before it starts working?

I hope it's not too late before you read this email.

Good luck

[Glenda]

Mopy:
Thank you sooooo much! I will definitely check these two doctors out and let you know if I need an "inside" connection to get in. I wish I had posted on this site a long time ago!
The Cyclosporin works well but it takes about 3 months before you can see a difference. I have taken 2 rounds of it 3-4 months each over the last 3 years. Probably about 6 months after stopping the last round I started to notice hair loss again. The doctors @ Mayo in Jacksonville are hesitant to give me another round because of the potency of the drug. It causes blood pressure to go up and can cause kidney failure thus the weekly monitoring of the BP and kidney function. They will normally put patients taking Cyclosporin on a blood pressure medication (if needed) during the course of treatment however I had a reaction to it and could not take it.
Before the Cyclosporin I went through the injections, plaquenil, cellcept and most of the topicals with no luck. They have told me that with any of these medications the hope is that the course of treatment will turn the LPP "switch" off. Sometimes it does, sometimes it doesn't. It is my understanding that LPP will eventually burn out but how much hair do we lose before that point? That's what scares me! I have already lost about 1 inch of my hair line that will not regrow.
I am scheduled to have another biopsy in October @ the Mayo to see if the condition has calmed down. If it is less inflamed than the 1st biopsy I will feel somewhat better but if not, the doctors have agreed to try one more round of the Cyclosporin. They tell me that the visual examination revealed very little inflamation but it can flare up again at any time.
Cyclosporin is definitely a last resort with serious potential side effects but at this point I am willing to take the risk! I am no doctor but my theory is that if the medication is stopped promptly the side effects are reversible, my hair loss is not!
Again, thank you so much and I will keep you apprised of my progress!

[mopy]

You're welcome!
I just joined this site as well. Not too many on it with LPP, or any other scaring alopecia.
Thank you for sharing your treatment regimen. It is very useful.
What are your symptoms? Do you just have the red/pink scalp or do you get big lumps like someone hit you on the head. I got two big lumps and it was just like someone hit me with a bat. I have never had itching, just burning. I can actually feel bumps when I wash my hair; however, they are not like pimples. They are just bumps under the skin.
I am on soriatane and accutane for an autosomally dominant skin disease. I've been told that both soriatane and accutane are used for LPP; however, I do not see it working for mine. I tried the steroid injections and they worked but because the doctors didn't do enough of them the LPP got angry so I'm now on prednisone. I have 2 weeks left. Our hope is that the prednisone buys time so when it's complete the plaquenil will start to work; however, I've heard from many others that it doesn't work. There's a 66% ratio that it will work but I don't know if that means the drug is 66% effective or 66% of the people that are on it find it effective. I just hope it works for me.
Dr Price in San Francisco, founder of CARF, tried cyclosporine on 3 people and saw results in 3-5 months and remission in 12 months. Because this seems so promissing, I will ask to go on cyclosporine if the plaquenil and prednisode do not do the trick. I'll also ask about thalidamide since that's suppose to be effective. I too am willing to try anything to keep my hair.
Do you know how you got LPP? I got mine from taking a drug called Enbrel. It was a trial for my hereditary disease. I first got drug induced lupus, then discoid lupus and now LPP. Doctors do not know how much is DLE and LPP. Believe it or not, Enbrel is being studied at Stanford University for both lichen planus and LPP. A drug that gave me LPP and DLE is now being used to treat it. What a way for the drug company to make money. So many people have been effected by the drug. I'm fortunate mine wasn't severe like systemic lupus, MS, TB, lymphoma cancer and fatality. One biologic agent similar to Enbrel was removed from the market June 2009. Believe me, cyclosporine is far safer than the other biologic agents. At least cyclosporine has been around alot longer.
I have a very good friend that is a pharmacist in risk management at the FDA. If you ever have any questions regarding cyclosporine, or any other drug, feel free to ask me and I'll get the answers for you.
Did you happen to read about the medical breakthrough for scarring alopecia? It is on the CARF website. They have discovered that either there are not enough lips to grow hair or else too much lips are toxic. Researchers are trying drugs on patients that enhance lipid processing. I have an appointment next Monday with one of the doctors on the CARF board. I will be asking about the lipid
drug(s) that are being tried and will let you know what I find out.
Due to my large family history of my hereditary disease I have been involved in a lot of studies throughout the states and also Japan; therefore, I am quite savy when it comes to research. Also, having friends at the FDA, doctors throughout the states and at NIH helps a lot. I'll try to post as much as I can when I find out new info or something that I think will benefit you.
Please do not hestitate to ask me anything. Please keep me updated on your progress.

[Jacquie]

Thanks for the discussion of LPP. Unfortunately, I live in Montana and so don't necessarily have access to the world's greatest medical care. I'm on a 6-week course of Elidel, which is the name for a pimecrolimus cream. So far no luck... after having steroid injections and some other topical treatments. And there's only one dermatologist in my city who handles alopecia. I, too, have the bumps on my scalp that you mentioned.

I get to Seattle occasionally on business. Anyone know of someone good there who handles LPP? It might be time to look a little beyond my small circle of medical care.

In any event, it's good for me to hear/read what you've experienced --and what has & hasn't worked. I go see the Dr. again this week and am glad to be armed with at least some suggestions, although the idea of cyclosporin sounds a little scary. I was on the verge of suggesting a 2nd opinion anyway -- so thanks.

[Glenda]

Mopy:
I just called Dr. Hougeir's office for an appointment and they said he does not see hair loss patients. Has he possibly gotten out of that area?

I don't know how I got the condition but in my mind I think it was about about 10 years ago and the symptoms just became blatently obvious about 3 - 4 years ago. In restropect I think it was an antibiotic (Rosephin?) that I was given in 1999 for a bout with viral meningitis. I was on it via IV drip for 4 - 5 days. After I got out of the hospital I remember my hair changed. My hairdresser was even stumped as to what was going on ... part of my hair line started growing in a weird direction and I thought it was just something I was going to have to live with.
Over the next couple of years I began seeing a slight receding of the hairline and started going to different doctors ... first an endocrinologist. They found my thyroid was off so I started on medication for that thinking (hoping) that would fix it. It took about a year to get the dosage adjusted. I continued to see hair loss so I then went to a dermatologist who checked all the things in the blood that might affect it ... testosterone, vitamin levels, hormones. Nothing. Unfortunately the derm I saw apparently had no knowledge of the condition so it wasn't even mentioned. My next stop was a rheumatologist. He ran all of the tests that they run ... lupus, shogren's, grave's, etc. Nothing. So ... about 3 years ago I finally said I'm going to Mayo Clinic where I know they are good. I lived in Jacksonville, FL for almost 30 years and had gone to the Mayo for other things and I knew they were VERY thorough and they don't give up until they have exhausted everything. The first derm I saw there (who was only a resident at the time) looked at my scalp and said "ummm ... looks like scarring alopecia. I would like to do a biopsy." Amazing! Just goes to show that you just have to hit on the right doctor and every doctor doesn't know everything. The biopsy confirmed LPP. She started me on the various treatments. The only one that worked for me was cyclosporine.

I have never had itching/burning that was significant. My scalp was slightly pink but not even enough that I noticed it. The doctor had to point out the inflammed areas to me. I may have had a few bumps here and there but they apparently resolved on their own. The major symtom is that I have lost about 1" of hairline over the last 3 - 4 years. Thankfully it is kind of slow moving, at least in my case.

I do have a question you may be able to get an answer for me on the Cyclosporin. To complicate matters I started having dental problems during the last round of cyclosporine and am in the process of getting 2 implants. The endodontist was concerned about the effect of the cyclosporine on bone and suggested I come off it until the implants were in. He was afraid that it would cause the implants to fail. We both have tried to research this with no luck. There is just nothing out there on it. I decided that if I go back on the cyclosporine it is a risk I will just have to take. My husband laughs and tells everyone that it looks like I can either have teeth or hair! :) Could you ask your friend connected with the FDA if there is any information on cyclosporine and bone?
Also, if there are any limitations on how long a person should be on it before it can cause irreversible health issues and are there any lifetime limitations on the amount a person can take? I am thinking that since it works, why not take it in cycles ... on 3 -4 months then off 6+ months until it decides to burn out. I am no doctor but if that is feasible I am certainly willing to do it in order to keep what hair I have left.

I am very interested in the lipid thing and looking forward to hearing the information you get on it.

Sorry for the lengthy post. You have been a blessing with all your information and help and it is soooo appreciated! Thank you!

[mopy]

Glenda,
I'm sorry you didn't have much luck with Dr. Hougeir. My guess is they thought you were interested in hair transplant. I would give the office another call and tell them you need to make an appointment with Dr Hougeir for treatment of lichen planopilaris (LPP), which is a chronic skin condition of the scalp. Sometimes the write words do the trick. If you still do not have luck then let me know and I"ll personally call him so he knows what is going on. He likes to know when office staff may not be understanding patients needs.

The bumps you talked about, are they like a pimple or just a hard bump? My scalp is so red which makes me believe I may have something else going on. I don't have itching but very severe burning and stinging. Everyone I communicate with says their scalp is light pink which made it hard to tell that anything was going on. They also say they don't have much itch. I'm yet to get biopsied in the new areas. I go to see a leading hair specialist in LA next Tuesday so hopefully she'll be able to do the biopsies and immunofluerecence test, plus look at my scalp to see if it resembles LPP. I'm also going to ask her about the lipid drugs. I'll keep you posted.

I will ask my friend at the FDA about the cyclosporine.

Did your doctors ever do a hair pull test? If so, what did they find? I am loosing hair with just the small white balb, which means it is a resting hair. Is it resting because the follicle is dead? What does scarring look like? Is it smooth skin on the scalp or is it underneath the scalp tissue? Nothing has been explained to me.

Please keep me posted and I"ll do the same.

[Glenda]

Mopy:
I will call Dr. Hougeir's office back and give more details. You are absolutely right about their not understanding. Family Dermatology is a very large practice and they have offices all around the Metro Atlanta area. I have used the office in Cartersville Georgia several times over the last 7 - 8 years. I don't have a problem with the doctors but the office staff at ALL of their locations I have been to leave something to be desired. Dr. Hougeir practices out of the office in Douglasville and I've never been there. So maybe it will be a welcome change.

I would have to say that the bumps I had were more like pimples. I vaguely remember having some minor scaling periodically. I have never had very much itching and no burning at all. Neither was my scalp really red. It was actually just pink but so faint that the dermatologist had to point it out to me. She showed me how her scalp was perfectly white and that mine was pinkish.

They just last month did the hair pull test and told me that the shedding I am experiencing now is "telogen effluvium." She assured me that it was hair that would grow back and wasn't part of the LPP. Mine also have the root "bulb" when they come out. My understanding is that this is being pushed out by new hair and is just prematurely shedding. From my limited research it can be caused by either medications or some type of unusual stresses. Also, the actual shedding doesn't begin until 3 - 4 months after the introduction of the medication or stress so it is often difficult to determine the actual cause.

I am told that the scarring from LPP is under the skin and cannot be seen, at least with the naked eye. In my case the areas that are now bald is smooth and shiny. It was explained to me that with LPP the folicle becomes inflamed (like a wound) and the hair dislodges. At that point the folicle kind of scabs over and heals leaving it scarred preventing it from producing more hair. I guess that is why hair loss from LPP is permanent and I presume the folicle is then dead. This is also why it is said treatment has to be early and aggressive. The problem with that is finding a doctor that even recognizes it. I was probably 2 - 3 years into it before I found a doctor that took proactive steps.

I am not sure if I mentioned that Mayo Clinic put me on doxycycline a few weeks ago until I go back for the biopsy. So far I can't that it has done anything for me. You may want to mention it to your doctors as well. From what I have learned, different treatments work for each individual and no two respond the same.

Any information you can get on cyclosporine will be GREATLY appreciated! I will definitely keep you posted!

[mopy]

Glenda,
I'm glad you are giving Dr Hougeir another chance. You will not regret it. He's very kind and caring. He will do what ever it takes to give the best care and treatment. When I was having difficulty with my hereditary disease he took his own time to research new treatments here in the states and in Europe. He never gave up or gave any signs that he couldn't help me when my disease was angry. He is also very concerned about how his staff treats the patients so if you have a bad experience please let him know. He is very familiar with LPP and has treated several patients. Mayo here in AZ did not explain anything to me. As a former doctor and close friend, Dr Hougeir explained everything to me and the treatment options. Here at Mayo they said that steroid injections were only to be every four weeks. Dr Hougeir said it should be every week if the disease is severe. He said he has given people injections every week when the LPP was at it's worse stage. Please know that he will help you and if he needs a second opinion he is not afraid to ask another doctor. He does not have a high ego. If you do see him, please say 'hi' for me. You can tell him a patient with DD, DLE and LPP referred you and he'll know who it is.

Thank you so much for sharing your symptoms with me, hairloss pattern and the difference between scarring and nonscarring. The derms at AZ Mayo look at my scalp for scarring, rather than do a biopsy to see if there is scarring underneath. The hair follicle is underneath the skin that becomes scared and once that happens the skin on the surface becomes smooth. If they see smooth skin then they say there is scarring but if there is no smooth skin then they say there is no scarring. I think it's wrong because the scarring starts below the skin.

When you lost your hair due to LPP, did it fall out with the white balb which made it confusing as to whether it was from TE or LPP? I think some of my hairloss may be related to both LPP and TE. I take soriatane and accutane which cause hair loss and can cause TE due to an excessive amount, which is what just happened to me.

I will ask my friend at the FDA about cyclosporine since I'm considering it. If my body can handle soriatane, accutane and enbrel then it can handle cyclosporine. Cyclosporine is less harsh than enbrel and the other biologic agents.

I have read that LPP is treated with tetracycline and doxacycline antibiotics. Unfortunately, I can not take them due to being on soriatane and accutane. However, I am on keeflex. There is another antibiotic called metronidazole that is similar to tetracycline and doxacycline so I'm going to ask to go on it. This drug does not interfere with soriatane and accutane. Dapsone is another one to try.

Did you try any other treatment prior to going on cyclosporine or did Mayo put you on that for first treatment? The Mayo here starts out with the weakest drugs and works their way up. Doing that prolongs the disease and puts it at greater risk for scarring.

I'll keep you informed on my progress and also about the cyclosporine.

[Glenda]

The Mayo in Jacksonville also does the least potent drugs first. I had the cortizone injections and started on biotin with no improvement before I went to Mayo. They started with the plaquenil for a couple of months, then cellcept for a couple of months and then the cyclosporine. I agree that method prolongs the disease but I kind of understand that they want try things with the least potential side effects first.
I never really saw the hair that was coming out from the LPP. Since mine is the "frontal scarring alopecia" type the only thing that stood out was the receding hairline around my face. That was very gradual until the last 2 years or so and seems to have picked up some speed. The TE that is going on now is VERY noticeable since my hair brush is full of hair by the end of the day. Of course when that started I immediately thought it was the LPP and went back to the Mayo in a panic. I was relieved when they said it was only TE and that hair should grow back. The LPP is still a problem but at least the TE isn't permanent. I am really anxious to get results from the next biopsy.
Good luck to you in LA!

[mopy]

Hi Glenda,

My appt with the hair specialist in LA went well. She took blood to run various tests and also did biopsies. She also did a thorough body check for lichen planus and found nothing. I guess 50% of the people with LPP can get it elswhere. So far I'm clean of that. Yeah! The biopsies were sent off to a pannel of hair pathologists for their determination of what I have. In addition, she took my Mayo medical file. She will review the records and also forward them off to Dr Jerry Shapiro, one of the best national hair specialists, for his review. She will also have him review the biopsy results from Boston and also blood tests once all are in. Once they all review everything they will discuss my treatment plan. She spent 3 hours with me. I was exhausted by the time I left her office. I'll hear back from her next Monday/Tuesday and visit her shortly after that.

The doctor told me that there is a new institute starting in 6 months for research/treatment pertaining to cicatricial alopecia. I also learned about a major breakthru on CA, and trial medications that are being used. The medications are used for type II diabetes. One of the medications is called Actos. You can access the article at: www.entrepreneur.com/tradejournals/article/202437848.html (http://www.entrepreneur.com/tradejournals/article/202437848.html)
I would print the article and take it to Dr Firas Hougeir. I guarantee he will f/u on it. He will probably even contact Drs Price, Cotsarelis, Shapiro, Washenik and Karnik.

The doctor did mention that she does not recommend cyclosporine since it is very hard on the system. She could not recommend it for me since I have to take soriatane and accutane for my hereditary disease; however, she will consider it provided the plaquenil and prednisone does not work, and I try cell-cept first.

I am still waiting to hear back from my friend at the FDA regarding cyclosporine. Once I do I'll let you know her input on the drug.

I learned about a compounded protopic that can be used rather than the ointment. It works with the Tcell, which is what the cicatricial alopecias are. I currently use the ointment and it is messy, but if it works I'll deal with the messy. Dr Firas Hougeir introduced me to protopic for my hereditary disease. It cuts down the itch and inflammation without the side effects like steroids. Have you ever tried it?

I'll keep you posted on what I hear and also about the new compounded protopic once I talk to the doctor next Monday/Tuesday and have my visit with her after that.

If you like, I can call and talk to Dr Firas Hougeir about the medical breakthru, or anything else. I hope you don't mind but I did let him know about you making an appointment and your current treatment for LPP. If you still need to get in ASAP to see him and have a hard time with the staff, let me know and I'll give him a call so he can fit you in. I recommend you get a copy of your Mayo file for Dr Hougeir. You don't have to pay for the copy and it's actually quite quick getting it. It only takes five minutes. You can probably stop by the desk and request it and then pick it up after your appointment. That's what I did and it worked quite well.

Take care and please let me know how you are doing, and I'll do the same.

[Glenda]

Mopy:
Sounds like you had a very thorough visit with the LA doctor! I have already printed a copy of the article and will take it with me when I see Dr. Hougeir. I haven't gotten the appointment yet. A lot has been going on this week but I plan to call tomorrow. I don't mind at all that you told him about my treatments. That is perfectly fine! I have copies of all my doctors records and take them with me to all of the doctors I see. I learned a long time ago that it is easier to get copies right away rather than try to get them by mail later!
I have tried the protopic and you are absolutely right that it is messy!!! It did not seem to help mine. The compounded may be better and might be worth a try.
Thanks for all your info! Take care and I will keep you posted.

[mopy]

Hi Glenda,
I spoke with Dr Hougeir and he said he saw you. Of course, he could not tell me how things went due to patient confidentiality. I hope all went well and you found what you are looking for. Did you get your biopsy results from Mayo? If so, I hope they were positive. I tried convincing Mayo to let me try actos but they wouldn't since there are no reports indicating the drug works for LPP. It's too early in the test stage so there are no reports. I'll continue to take plaquenil until there are positive reports about actos. How is your LPP? Is it finally in remission?

[Glenda]

Hello ...
Yes I did see Dr. Hugeir last week and he seems to think the LPP has burned out just from visual examination. I am not scheduled to have the biopsy at Mayo until 10/2 and Dr. Hugeir thinks that I should go ahead with that. He seems to have a lot of confidence in the Mayo lab. So, we'll see.
I am still losing hair but they say it is the tellagen effluvien (?) that isn't permanent.
I did like Dr. Hugeir and I think I could get comfortable with him. Actually I did like him better than any of the doctors I have seen with that practice. However, the staff at that location is not much better than the other locations. My appointment was at 10:50am and I finally saw him shortly after 12:00 Noon. I'm not sure if they deliberately over book or if that was just a fluke. He said to see him again in about 3 months so I will see if that happens again. Nothing irritates me more than to have to sit in a waiting room for extended periods of time. Once I can overlook, but if it is every appointment, something is wrong with their scheduling system.
I do think he is comfortable handling this condition. Outside of Mayo Clinic, all of the doctors I have seen gave me the feeling they were unsure and/or uncomfortable with it. Probably because of not having much experience with it. As we both have learned it is a relatively rare condition! Having someone close by that is familiar and comfortable with it makes me feel much better. It is really difficult to deal with a doctor 350 miles away. I am very grateful that you directed me to him! If I feel it is flaring up again I won't have to wait a month or more and drive 7 hours to get it checked. Plus he is in network with my insurance and it won't cost me as much!!! :)
Have you gotten all the information from the LA doctor yet? Did the biopsy confirm anything?
Take care and keep me posted as well.

[mopy]

Hello Glenda,
Glad to hear you are comfortable with Dr Hougeir. If you don't mind, I'm going to talk to Firas (Dr Hougeir) about your lengthy wait. As I previously mentioned, Firas likes to know when something isn't running smoothly. He wants his patients to be happy. I'm guessing your wait had to do with the office staff because I never waited at his office here in Phx.
Yes, not too many doctors know about scarring alopecia. Firas was the one that explained scarring alopecia to me and the available treatment options and which ones have worked best on his patients. Firas would tell you if he wouldn't be comfortable treating your LPP. He is very caring and is always looking out for the patient's needs.
If the LPP has burned out then your hair loss must be TE. I've went through complete hair loss three times due to TE. The nice thing is it's not permanent hair loss and will grow back. My TE lasted anywhere from 2-3 months. I used Rogaine and took biotin, b6, b12, vitamin C, vitamin D, magnesium, and zinc to speed up the hair growth. I still take all the supplements to help keep the hair on my head. I do have to say they work. Glenda, try not to worry about your hair loss not being TE. Worrying about it isn't going to change what is happening. Just believe/hope that the doctors are right about it being TE.
Why are you going to Mayo next month? Why don't you let Firas do the biopsy?
I did hear from the LA doctor about my biopsy. It came back negative for any form of cicatricial alopecia. The doctors at Mayo said it is negative because I was on prednisone when the biopsy was done and prednisone wipes out all activity with the lymphocytes (tcell). However, Mayo still doesn't know if I have a form of cicatricial alopecia. They do believe I had discoid lupus and/or lichen planopilaris last year, which was caused by drug induced lupus from Enbrel. They do not know if the new activity is any form of cicatricial alopecia because when the resident did the biopsy he did not do it on a new inflamed area. We will never know until the steroids clear out of my system and a biopsy is done on a new area. By the time the steroids are cleared out of the system the disease may be burned out so the biopsy will not be accurate. Right now I will continue with the plaquenil to keep me in check should I have a form of cicatricial alopecia. So far I am doing fine and have new hair growth.
Take care.

[Odie]

Hi! I'm new to this forum and I also have a receding hairline. It's actually receded about 2 inches. I'm waiting for a referral to a dermatologist. But after reading this post I wonder if I have LPP too. Everything you've said I have, but no bumps. Can you have it without any bumps? My scalp in the front where my hairline has receded is like baby skin, soft and a different, lighter color from my forehead. I just thought it was because it had never seen any sun but could that be the pink you are talking about? The rest of my hair is very thick but I think that's from the minoxidil. I'm just looking for some answers. This has been such a hard thing to deal with. Thanks for your help.

[Angela]

What does scarring look like? Is it smooth skin on the scalp or is it underneath the scalp tissue? Nothing has been explained to me.

Please keep me posted and I"ll do the same.

From what I have seen most of the scarring is under the skin. The scarring takes place in the follicle. However, since the scarring also leads to atrophy, in my case, there is a slight depression...almost like dimples or divots on my scalp. It isn't deep, but in the right light you can see that my spots are a little concaved and a different color than the rest of my skin. In the beginning those spots were lighter than my skin color, however, some of those first bald patches have now turned a darker shade...like a big freckle or something. I've had to get used to that especially since I go out bald.

[mopy]

Hello Odie,I am so sorry to hear about your hairloss. Don't panic since you do not know the cause of your hairloss. Some people with LPP have only an orange/brown, pink or red scalp with no bumps, some may have just a colored scalp, some may just have flaking, some may have itching along with a colored scalp, and some may not have any of the mentioned symptoms. Your receding hairline may not be scarring alopecia and the redness may be from the Rogaine. It is common for Rogaine to cause the skin to turn pink/red. Have you stopped using the Rogaine for 1-2 weeks to see if the redness goes away? CARF (cicatricial alopecia research foundation) has useful information about scarring alopecia. You can access their website at www.carfintl.org. There is another website that has useful information about scarring and nonscarring alopecia; and you can access the site by going to www.keratin.com. Take care and good luck with your derm appointment.

[mopy]

Hi Glenda,
Went to the derm again. I was asked if I want to try cyclosporine for my hereditary disease. No, not for the scarring alopecia. However, he did say it may work for the scarring alopecia. So, today I had all the tests and on Monday the doctor will call to say if it's okay to go on it. So, I'll be on soriatane, accutane, plaquenil and cyclosporine. I wonder how much my body will be able to take before it breaks down? How long did it take before you noticed an effect? My doctor said it's fast acting; however, I read it takes anywhere from 1-2 months. Maybe it's fast acting for my hereditary disease and not the scarring alopecia. I was doing so good. All the scalp redness and bumps were gone but just activated when my hereditary disease flared. I'm guessing some of it is my hereditary disease. I guess that's why Mayo is so confused as to what I have. How long were you off the cyclosporine before you had a biopsy to see if things have burned out? How long did it take before you started loosing your hair? Was it falling out when you noticed your scalp was red or did it fall out after that? I am sure it's just a matter of time when my hair will be falling out. The redness started late June but I didn't begin plaquenil until July 18 and steroid injections a week after that and prednisone the 2nd week of August. I heard that when hair follicles are traumatized the hair stops growing and goes into a resting stage and then falls out 2-3 months later. One would think mine would have already fallen out since it's been over 2 months since everything started. Oh well, I will not worry because there is nothing I can do. I did let Firas know about your lengthy wait. You should not have to wait the next time you go see him. Well, I'll let you go. Take care and keep in touch.

[Glenda]

Mopy:
Sorry it took me so long to respond. I've been away for a few days.

I have been told that it takes 3 months to see any difference in your hair with any medication and that sounds about right from my own experience.

The last time I took Cyclosporine it was about 3 months before I could really see any new hair coming in. It seems that it was about 5 - 6 months after I stopped taking it the last time that I started noticing it coming out more in my brush and on the counter after brushing.

I haven't had the 2nd biopsy yet. I have an appointment at Mayo this Friday and they will do it then. I stopped taking the Cyclosporine in January and took nothing until June when I started on doxycycline. Actually I am just now starting to have some new growth and the "fall out" has slacked off. Not sure if it's the doxycycline or if it is truly burning out. I am a little concerned about having the biopsy while on the doxycycline since that could possibly "mask" the results. Even Dr. Hougeir said that the medication could account for there being no redness at this point.

Just for your information, the derm at Mayo told me that even if your body can tolerate it you can only take Cyclosporine a few times in your life and not more than 1 year total. That's why they didn't want to give it to me again in June and convinced me to try the doxycycline. They said I had already had my lifetime limit of cyclosporine. I was very upset with them because I did not know this when I went there since no one had explained it to me. It had put the condition in "remission" in the past and I kind of had that as my fall back. I figured when it flared I would just take a 3 - 4 month round of cyclosporine and get it in check until the next time. She said that they do not know what "switch" turns this condition on and when they resort to cyclosporine it is in hopes that it will turn the "switch" off. If it doesn't turn it off within a 3 - 6 month period then it's not going to.

Anyway, you may want to discuss that with your derm if they haven't already explained it to you. I would hate for you to take it and it clear everything up and then you be told you can't have it any more! :( At least you will have all the information going into it. Also, your derm may have a completely different view on the use of it. I have found that to be true in a lot of cases when dealing with doctors ... they all have their own opinion!

Thank you for talking to Dr. Hugeir. He does seem to be the type that wants his patients to be pleased. I will let Mayo do the biopsy this Friday and if it shows the condition to be calmed down, I will probably just continue with Dr. Hugeir and have him manage it from now on. He is only a 40 minute drive vs. Mayo being a 7 hour drive. I am very grateful to you for pointing me in his direction.

I hope I have answered all your questions. Sounds like your meds just keep growing. Hopefully there will be a resolution for you soon! Keep me posted on your progress and I will try not to be so delinquent in responding in the future!

[mopy]

Hi Glenda,

I had my derm appointment today and we are holding off on the cyclosporine. The doc said once my flare of my hereditary disease under control we will try it. Right now I'm on soriatane, accutane and plaquenil. I use soriatane and accutane for my hereditary disease. The doctor said that soriatane and accutane are also used for scarring alopecia. Well, I am one to testify that they do not work. At least they do not work for me. If they did, I wouldn't have bumps on my head.

How long did it take before you noticed your hair falling out? Was it right away when you noticed it red/inflammed or was it months to years after that? The doctor found another scar today the size of a pencil erasor. Of course it was in a spot where I never had steroid injections. All the spots where I had steroid injections have hair and the redness and bumps are gone. It seems like the injections work the best for me; however, the plaquenil is keeping the hair on my head.

Today I did some research on partial hair replacements. I was shocked to read stories from others that the annual cost for a partial hair replacement si $7000. I also read that the replacement piece needs to be replaced every 2-6 months. They start out at $1200 for the smallest piece. I could not imagine paying $1200 every 2 months or even 6 months. Plus, there is a maintenance fee which is included in the contract. I guess I'm in the wrong carreer. What a way to take advantage of people suffering from hair loss.

I do know that prednisone and plaquenil will mask a biopsy since they target inflammation. I would think any type of drug used to target inflammation would mask the biopsy. I guess that's something you will find out when you have your biopsy.

I asked the doctor about the use of cyclosporine and he was not aware of only being on it for a total of 1 year.

I'm hoping for you that your LPP has burned out and never returns. Please let keep in touch.