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Update- back from the specialist
Well I finally had the appointment with the Good Doctors at Sunnybrook Hospital in Toronto- it is a teaching hospital and part of the University of Toronto Faculty of Medicine.
I met with the Dermatology spcialists- a great Intern and Dr. Yeung. Basically they run a clinic for patients with Alopecia and use DPHP I think it's called..a chemical compound used to trigger hair regrowth in AA, AT and some AU patients.
In my case, I had too many negative factors to be a good candidate for total regrowth. The factors include age of first onset, age of next incident and the state of Alopecia in the current presentation at the clinic. Also, I had some peculiar signs of "golfball" like pitting in my fingernails which also make for a bad potential outcome for sustained regrowth.
The scarring on my head was apparently not LPP as the Doctors originally thought it may be- just a symptom of the Alopecia process on my scalp. This is good as LPP can be classified as a separate disease with other complications from the Lupus family etc.
They did reccommend continuing with the injections of cortisone on my eyebrows as this has a very good outcome- it's the only part I am really concerned with.
Previous posts I made to groups and individuals I had mentioned that the Lumigan was working on my eyebrows- but it is really just the dealyed response to the injections I had a month ago. I am getting small patches across the injection sites- there are 5 sort of dots regrowing so I know it's the Kenalog shots and not the Lumigan.
The doctors at Sunnybrook said to discontinue the Lumigan application on the eyebrows and just stick with te shots.
I am still using the Lumigan on the eyelids- 3 weeks and coiunting- no response yet, but it is supposed to take 5-6 weeks.
I will keep updating as I move along the treatment timeline.
So it looks like no hair for me- oh well, I am getting used to it and trying to even out my skin tone to cover up the cueball white left on my scalp from where my hair was by sitting out in the sun for 15 minutes at a time a few times per week.
Craig
I met with the Dermatology spcialists- a great Intern and Dr. Yeung. Basically they run a clinic for patients with Alopecia and use DPHP I think it's called..a chemical compound used to trigger hair regrowth in AA, AT and some AU patients.
In my case, I had too many negative factors to be a good candidate for total regrowth. The factors include age of first onset, age of next incident and the state of Alopecia in the current presentation at the clinic. Also, I had some peculiar signs of "golfball" like pitting in my fingernails which also make for a bad potential outcome for sustained regrowth.
The scarring on my head was apparently not LPP as the Doctors originally thought it may be- just a symptom of the Alopecia process on my scalp. This is good as LPP can be classified as a separate disease with other complications from the Lupus family etc.
They did reccommend continuing with the injections of cortisone on my eyebrows as this has a very good outcome- it's the only part I am really concerned with.
Previous posts I made to groups and individuals I had mentioned that the Lumigan was working on my eyebrows- but it is really just the dealyed response to the injections I had a month ago. I am getting small patches across the injection sites- there are 5 sort of dots regrowing so I know it's the Kenalog shots and not the Lumigan.
The doctors at Sunnybrook said to discontinue the Lumigan application on the eyebrows and just stick with te shots.
I am still using the Lumigan on the eyelids- 3 weeks and coiunting- no response yet, but it is supposed to take 5-6 weeks.
I will keep updating as I move along the treatment timeline.
So it looks like no hair for me- oh well, I am getting used to it and trying to even out my skin tone to cover up the cueball white left on my scalp from where my hair was by sitting out in the sun for 15 minutes at a time a few times per week.
Craig
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Comment by Brittney on April 14, 2009 at 12:38pm
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What is it they would have used on you to try and get your hair back had you qualified? I saw you said something about DPHP...what is that? And thanks for keeping us updated on your treatments. Good luck!
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Comment by Craig S on April 14, 2009 at 3:51pm
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Hi Aimee and Brittney- there are two variations- DSP or Squaric Acid that has been used for a while as a sensitization agent- basically tricking your skin to send the rogue T Cells after the inflammatory agent rather than our coveted hair follicles.
The DPCP or whatever it is formally called is another chemical sensitization treatment that does not present the potential burning and scabbing of the DSP- this is my understanding. So it has the same Mechanism of action, but not the variance of "out of bounds" side affects.
The prognosis is best for repeat AA patients those with AT- moslty scalp and some who have AU with an early onset age.
As I mentioned, I am not a good candidate for total regrowth as I ahve the pitted finger nails and some other issues.
You can ask your Dermatologist about the treatments- in Canada, the Hospital is the only place that offers the treatments as they have the widest experience, most cases and run a big clinic.
The compounds have to be used fairly quickly and require special handling / mixing of a varying amount of strength - I think this is beyond the scope of the average Derm's office to make this a profitable clinical venture.
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Comment by Heather L on April 14, 2009 at 5:54pm
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Hi Craig,
I have talked to my doc about diphenylcyclopropenone (DPCP). And thought I‘d share what I was told. Based on what she told me- it might be a good thing you did not qualify.
What was explained to me that for any contact sensitizer to work it needs to cause inflammation/irritation for the treatment to work. As you said- the premise is that it is diverting the immune system’s attention from the hair to the skin rash.
The amount needed is trail and error- all based on how sensitive your skin is- which often leads to more severe reactions then wanted such as blistering….
She did share that it is about 35% to 40% effective to re-growing hair- however once treatment has stops many will have a reoccurrence of some form of AA as high as 65% in some studies.
She said a study in Iran showed that 40% of patients developed occipital lymphadenopathy (swollen lymph nodes at the back of the head-which can be painful and possibly lead to infection) and hyper pigmentation.
At least she did say that most of the side effect are short term and can be controlled by stopping treatment.
Good luck with the steroid injections- hope it works well for you eyebrows!! :)
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Oh man, thanks for all the posts. Sounds way too scary for me to try - not worth it! I do appreciate the info though!
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