Alopecia World
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My Alopecia Story
Last year I was diagnosed with a mixed Scarring Alopecia. Alopecia is just a fancy word for hair loss. This is an extremely rare condition. There are many different types of Alopecia (including male pattern baldness) and they are further categorized into scarring and non-scarring.
Without medication my symptoms are a bright red inflamed scalp, dry flaky lesions, prickly pear itching,, patchy areas of pustules that burst and drain. and areas of tenderness all over my scalp. It is pretty much nasty! When I was diagnosed I cried for 3 days out of pure self pity. It was pathetic, but necessary.
Since my diagnosis I have done lots of research and I have been on many different medications with very little, if any, improvement. Yet, I remain hopeful and grateful.
MY ALOPECIA STORY
For 2 years prior to my diagnosis I have been to several different dermatologists. They kept diagnosing me with seborrhea dermatitis and prescribed Nizoril Shampoo. In truth the Nizoril helped a little bit but never really cleared up the problem. I kept going back and they kept giving me more shampoo. Pretty soon they switched to a Clobetosol shampoo. That didn't work either.
About August of last year I started to notice that I was losing my hair. I mentioned it to my dermatologist and she said "oh, it will grow back" She did not even look at my hair or my scalp on that visit and I decided to once again try another dermatologist. That is when I met my current dermatologist. She immediately laid hands on me. She checked all of my skin, not just my scalp. She even looked in my mouth. Then she thoroughly and completely examined my scalp and told me that it did not appear I had seborrhea dermatitis but instead alopecia. She noticed that each hair follicle had a single scale protruding from the follicle and that my scalp was inflamed and I had patchy hair loss starting. She took a biopsy of my scalp and made an appointment with me for 10 days later to review the results. The results were a mixed scarring alopecia. Not good in alopecia world. Basically it means that my alopecia is a mix between an inflammatory type and a neutrophilic non-inflammatory type. The following video is awesome in explaining, simply, the different types of scarring or cicatritial alopecias.
Scarring Alopecia
He rocks!
MY TREATMENT PLAN
What does one do with a diagnosis of mixed scarring alopecia? Apparently you treat the inflammatory process, according to my doc whose ground I worship. If you live in the Seattle area be sure to email me and I will be happy to refer you to my dermatologist. You will lover her, just as I do.
The following has been my course:
Tetracycline 500mg 4 times per day. I took it for 3 months. Tetracycline does have some anti-inflammatory effects. The drug did improve the overall condition of my scalp. I did notice that it was much less red and I did not have the pustules or flaky lesions that I had previously been fighting. I was pleased with the progress but, clearly, I was still losing hair.
Along with the Tetracyline I also used Clobetasol topical solution 0.05% twice daily directly to my scalp.
In my research I had found that some people had some success with Rifampin and Clindamycin together. Each at 200mg twice daily. I presented this to my doctor and she was willing to try it for a 10 week course. I did see a lot of improvement with this medication and the inflammation had toned down to a dull roar. I felt my hair loss had slowed but had not stopped. I felt better and encouraged. I wanted to stay on the Rifampin and Clindamycin. However, there are a lot of really bad side effects with these drugs. First of all, Rifampin causes all of your body fluids to turn orange. Bright orange. Orangery Orange. Very Orange. That means if you cry you have orange tears. If you are into the Twilight books and all that it could be kind of cool to have orange tears. I loved the twilight books but am not really into orange tears. If you wear contacts, it will turn them pink. Of course it is not just your tears that are orange. It is everything else too, even your bowel movements. If you couple that with the side effects of Clindamycin which is loose stools, well.....it is not pretty. Furthermore. Rifampin is very hard on your liver. Long term use is sure to lead to cirrhosis. It is just not well tolerated.
So, my doctor really did not like that course of treatment and since I was still losing hair, she wanted to move on. About a month after I finished the Rifampin /Clindamycin treatment my symptoms were back in full force, even though I had already started my next treatment plan.
My doctor felt my hairloss most resembled Lichen Planopilaris and Frontal Fibrosing Alopecia. I agreed with her. Why did she think that??? Because my hair loss is patchy, my scalp is inflamed and I am losing most of my hair in the front of my scalp and my hairline is receding. Frontal Fibrosing Alopecia is a form of lichen planopilaris and though they present somewhat differently there are also many similarities. The outlook for Frontal Fibrosing Alopecia? Bleak.
Next, my doctor started me on Plaquinil. This medication has typically been used in patients who have Rheumatoid Arthritis. Many people who have lichen planopilaris have had great results with Plaquinil. It takes about 3 months to take effect but many people stop losing their hair with the use of this med. Side effects? Yes, of course, all medications have side effects. Cloudy corneas (which clear up after you are no longer on the medication) and retinal detachment which can lead to blindness in the eye (not reversible).
Aren't the side effects of these meds just horrible? They make you really want to stay away from them entirely. But, I went on the plaquinil. For the first 2 months I was sure I was going blind. I was scared to death, really. I did get over my fear and am still on Plaquinil. I will get my eyes checked religiously every year and for any inkling of a problem as needed.
I know the questions you have is this: Does it work? The answer is a resounding NO!
I am almost back at square 1. My scalp is bright fire engine red. It has flaky scales in the front part of my scalp. My scalp is better than it was 3 months ago (I Have been on it a total of 4 months now) but not a whole lot. Furthermore, I have lost more hair in the last 4 months than the entire rest of the year.
NOW WHAT?
Today I went to see my beloved dermatologist. She is so wonderful. I would adopt her if I could as I am sure I am old enough to be her mother. But I swear, she is going to kill me. She is recommending I go on Cell Sept.
If there is anyone out there who has alopecia and has been on Cell Sept, I really want to talk with you. I would just like to learn what you have been taught about the medication and how you are doing on it. How long have you been on it and how well is it working for you?
Cell Sept is used as an anti-rejection drug in transplant patients. The risk of this medication is that it can deplete your immune system. Increased susceptibility to colds and upper respiratory infections is not uncommon. In addition people on these meds have an increased chance of getting lymphomas or leukemia. Hmmmmm. I have 2 young children to raise. I just can't do it right now. I would like to know more before taking this med. As I learn more, so will you, I promise.
It should be noted that my doctor did say that, while there are risks with Cell Sept, the risk is low.
The current plan for me is to continue with the Plaquinil to at least minimize my symptoms. Plaquinil takes a long time to work anyway (3-4 months). I am adding Clobetasol again, which is a topical steroid to treat the inflammation. My doctor also wants me to try mens strength Minoxodile, which is Rogaine. Anyone have any luck with Rogaine??? I will see my dermatologist again on December 16. Then I will have to make some decisions about how I am going to continue, or if. Hmph!
Please know that I still have a lot of hope. I will never give up. And if I lose every last little hair on my head, I can cope with that. I am blessed with family and love in my life. People who love me no matter how much hair I have on my head. I will get lots of sympathy hugs and pats on the back from people who will think I have cancer and I love those hugs and pats. I will take it and I will not trade it for anything in the world. I wouldn't choose it but I won't lose it either.
Good Lord, I am sorry this post is so long. I just want those of you who have Alopecia to have a resource for some information. I will continue to post lots of information on all types of Alopecia so be sure to check back.
Chin Up!
See more on my blog at www.adoctorandanurse.com
Without medication my symptoms are a bright red inflamed scalp, dry flaky lesions, prickly pear itching,, patchy areas of pustules that burst and drain. and areas of tenderness all over my scalp. It is pretty much nasty! When I was diagnosed I cried for 3 days out of pure self pity. It was pathetic, but necessary.
Since my diagnosis I have done lots of research and I have been on many different medications with very little, if any, improvement. Yet, I remain hopeful and grateful.
MY ALOPECIA STORY
For 2 years prior to my diagnosis I have been to several different dermatologists. They kept diagnosing me with seborrhea dermatitis and prescribed Nizoril Shampoo. In truth the Nizoril helped a little bit but never really cleared up the problem. I kept going back and they kept giving me more shampoo. Pretty soon they switched to a Clobetosol shampoo. That didn't work either.
About August of last year I started to notice that I was losing my hair. I mentioned it to my dermatologist and she said "oh, it will grow back" She did not even look at my hair or my scalp on that visit and I decided to once again try another dermatologist. That is when I met my current dermatologist. She immediately laid hands on me. She checked all of my skin, not just my scalp. She even looked in my mouth. Then she thoroughly and completely examined my scalp and told me that it did not appear I had seborrhea dermatitis but instead alopecia. She noticed that each hair follicle had a single scale protruding from the follicle and that my scalp was inflamed and I had patchy hair loss starting. She took a biopsy of my scalp and made an appointment with me for 10 days later to review the results. The results were a mixed scarring alopecia. Not good in alopecia world. Basically it means that my alopecia is a mix between an inflammatory type and a neutrophilic non-inflammatory type. The following video is awesome in explaining, simply, the different types of scarring or cicatritial alopecias.
Scarring Alopecia
He rocks!
MY TREATMENT PLAN
What does one do with a diagnosis of mixed scarring alopecia? Apparently you treat the inflammatory process, according to my doc whose ground I worship. If you live in the Seattle area be sure to email me and I will be happy to refer you to my dermatologist. You will lover her, just as I do.
The following has been my course:
Tetracycline 500mg 4 times per day. I took it for 3 months. Tetracycline does have some anti-inflammatory effects. The drug did improve the overall condition of my scalp. I did notice that it was much less red and I did not have the pustules or flaky lesions that I had previously been fighting. I was pleased with the progress but, clearly, I was still losing hair.
Along with the Tetracyline I also used Clobetasol topical solution 0.05% twice daily directly to my scalp.
In my research I had found that some people had some success with Rifampin and Clindamycin together. Each at 200mg twice daily. I presented this to my doctor and she was willing to try it for a 10 week course. I did see a lot of improvement with this medication and the inflammation had toned down to a dull roar. I felt my hair loss had slowed but had not stopped. I felt better and encouraged. I wanted to stay on the Rifampin and Clindamycin. However, there are a lot of really bad side effects with these drugs. First of all, Rifampin causes all of your body fluids to turn orange. Bright orange. Orangery Orange. Very Orange. That means if you cry you have orange tears. If you are into the Twilight books and all that it could be kind of cool to have orange tears. I loved the twilight books but am not really into orange tears. If you wear contacts, it will turn them pink. Of course it is not just your tears that are orange. It is everything else too, even your bowel movements. If you couple that with the side effects of Clindamycin which is loose stools, well.....it is not pretty. Furthermore. Rifampin is very hard on your liver. Long term use is sure to lead to cirrhosis. It is just not well tolerated.
So, my doctor really did not like that course of treatment and since I was still losing hair, she wanted to move on. About a month after I finished the Rifampin /Clindamycin treatment my symptoms were back in full force, even though I had already started my next treatment plan.
My doctor felt my hairloss most resembled Lichen Planopilaris and Frontal Fibrosing Alopecia. I agreed with her. Why did she think that??? Because my hair loss is patchy, my scalp is inflamed and I am losing most of my hair in the front of my scalp and my hairline is receding. Frontal Fibrosing Alopecia is a form of lichen planopilaris and though they present somewhat differently there are also many similarities. The outlook for Frontal Fibrosing Alopecia? Bleak.
Next, my doctor started me on Plaquinil. This medication has typically been used in patients who have Rheumatoid Arthritis. Many people who have lichen planopilaris have had great results with Plaquinil. It takes about 3 months to take effect but many people stop losing their hair with the use of this med. Side effects? Yes, of course, all medications have side effects. Cloudy corneas (which clear up after you are no longer on the medication) and retinal detachment which can lead to blindness in the eye (not reversible).
Aren't the side effects of these meds just horrible? They make you really want to stay away from them entirely. But, I went on the plaquinil. For the first 2 months I was sure I was going blind. I was scared to death, really. I did get over my fear and am still on Plaquinil. I will get my eyes checked religiously every year and for any inkling of a problem as needed.
I know the questions you have is this: Does it work? The answer is a resounding NO!
I am almost back at square 1. My scalp is bright fire engine red. It has flaky scales in the front part of my scalp. My scalp is better than it was 3 months ago (I Have been on it a total of 4 months now) but not a whole lot. Furthermore, I have lost more hair in the last 4 months than the entire rest of the year.
NOW WHAT?
Today I went to see my beloved dermatologist. She is so wonderful. I would adopt her if I could as I am sure I am old enough to be her mother. But I swear, she is going to kill me. She is recommending I go on Cell Sept.
If there is anyone out there who has alopecia and has been on Cell Sept, I really want to talk with you. I would just like to learn what you have been taught about the medication and how you are doing on it. How long have you been on it and how well is it working for you?
Cell Sept is used as an anti-rejection drug in transplant patients. The risk of this medication is that it can deplete your immune system. Increased susceptibility to colds and upper respiratory infections is not uncommon. In addition people on these meds have an increased chance of getting lymphomas or leukemia. Hmmmmm. I have 2 young children to raise. I just can't do it right now. I would like to know more before taking this med. As I learn more, so will you, I promise.
It should be noted that my doctor did say that, while there are risks with Cell Sept, the risk is low.
The current plan for me is to continue with the Plaquinil to at least minimize my symptoms. Plaquinil takes a long time to work anyway (3-4 months). I am adding Clobetasol again, which is a topical steroid to treat the inflammation. My doctor also wants me to try mens strength Minoxodile, which is Rogaine. Anyone have any luck with Rogaine??? I will see my dermatologist again on December 16. Then I will have to make some decisions about how I am going to continue, or if. Hmph!
Please know that I still have a lot of hope. I will never give up. And if I lose every last little hair on my head, I can cope with that. I am blessed with family and love in my life. People who love me no matter how much hair I have on my head. I will get lots of sympathy hugs and pats on the back from people who will think I have cancer and I love those hugs and pats. I will take it and I will not trade it for anything in the world. I wouldn't choose it but I won't lose it either.
Good Lord, I am sorry this post is so long. I just want those of you who have Alopecia to have a resource for some information. I will continue to post lots of information on all types of Alopecia so be sure to check back.
Chin Up!
See more on my blog at www.adoctorandanurse.com
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Comment by Bald and Fabulous AKA Terri on April 22, 2011 at 11:05am
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WOW you certainly have been thru alot, and bless you for having the strength to continue your treatments and research. I cant believe the pain you must experience on a daily basis. In my own alopecia story, I have AU. I use to be treated with DCP but the pain of the weeping and blisters were enough for me not to continue. I wish you all the luck in whatever path you choose and hopefully the pain will ease.
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Comment by Judith on April 24, 2011 at 9:35pm
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I also have lichen planopilaris and it is no picnic. For years I've had a section of my hair that would not stop itching. Dermatitis was what the diagnosed and shampoos etc. I finally insisted from about the fifth dermatologist that they do a biopsy and the outcome is lichen planopilaris. I have a few spots that have scarred and of course I'm devastated. I am still able to basically hide it but I feel like my scalp is a full time job. I am always aware of it and it's enough to drive you nuts. At present I use clobetasol topical solution with some relief. I also have thinning in the front but what I am using now seems to be helping a bit. I ordered Remaxx system: http://www.shop.kingshead.com/category.sc?categoryId=3 which seems to be helping in some areas. I also use a laser comb which is also helping some. My newest product for the itching/burning is a product called Terrasil which I purchased over the counter. I also ordered and MSM cream and I'm taking MSM pills which is sulfur and is supposed to help with inflammation. I am trying everything I can to help stop any more scarring from happening. I prefer natural ways. Yucca helps with any scaling build up so I've also used that. Every night I have a ritural that I go through. I have to say that the Remaxx kit has helped quite a bit. I believe UVB lights are supposed to help with inflammation as well. I have other immuno problems so I prefer not to take drugs that will suppress the immune system because this problem is caused by immune deficiencies. I feel that a lot of the drugs will only mask the problem, not help in the end. I have also order an herbal treatment online for lichen planus and I will post later on this to let you know if it helps. I am trying to juice more and cut out as much processed foods as possible. Not sure if that will help or not. One other product I use to help cover the scarred areas is Joan Rivers, Great Hair Day. I hope some of this info is useful.
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Hi Jana,
Thanks for sharing your story!
I just moved to Seattle from Texas a month ago and my AA has started to flare up again. DCP worked really well for me the last time and I am looking for a doctor in the Seattle area that uses this treatment. Would you still suggest your doctor? I know it's been a few years since you wrote this. Would love your thoughts on good derms in the area.
Thank you!
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Ashley, I do not know if my doctor uses the DCP treatment or not but I know she will do whatever she can to help you. Her name is Tanya Hathaway, M.D. She works for the Everett Clinic in Everett just off of Colby Ave. I have been to many dermatologists in the area, including one who claimed to be a hair specialist. They were all horrible, in my opinion. Dr. Hathaway is the only Doc I have seen for my lichen planopilaris who has been able to help me. She provided me with reams of information and supportive research. I really won't go to anyone else if I don't have to.
Furthermore, Dr. Hathaway identified a skin cancer on my husbands nose that he did not even know was there. She walked into the room and said "What is this on your nose?". She is very good at her job. I have heard some people complain about her bedside manner. My experience has been very good. However, I could care less about her bedside manner, I see her for her skill. Here is a link to her phone and info: http://www.everettclinic.com/Physicians/Tanya_Hathaway.ashx?p=3171&...
I wish you the very best. I certainly know how hard it is to deal with hair loss. I feel very fortunate that after so many years I still have hair and Dr. Hathaway believes I will not lose it all. I am happy to say that at this time in my life I know if I lost every strand I could handle it. Just hair but God bless hair. God Bless you too Ashley.
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Thank you so much, Jana! Last time I lost all my hair I was almost entirely bald by the time I found a doctor and treatment that worked. I don't want to go through that again and am hoping to find someone here in Seattle much sooner than that. Thank you thank you!! Good bless you as well. I am glad things are going well for you.
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