Replies to This Discussion

Permalink Reply by Susanne on February 2, 2013 at 4:48pm

That had to have been frustrating to hear, Michele. Was this in Boulder? I'm wondering whether you could share the name of the doctor. Best of luck with the regimen. I know what you mean about the gratitude for not having to cope with a harder situation.

Permalink Reply by Michjo57 on February 2, 2013 at 5:48pm

Dr. David Norris is the alopecia specialist. I went to the Aurora CO campus. It is the Anschutz Cancer Building 3rd floor. You don't need a referral to get in either. Are you battling FFA also? Is so, have you been on any meds for it?

Permalink Reply by Susanne on February 2, 2013 at 7:11pm

Thank you, Michele. And yes, I'm battling it myself. I've been on plaquenil for a few months and almost three weeks ago I started a gluten-free diet. Today I go off alcohol for a month and am minimizing sugar- and dairy intake. I was so frustrated by the lack of available therapies that I decided to have a go at tackling the problem from the inside out. I'm doing this under the guidance of a nutritionist/acupuncturist. The inflammation is definitely down. I'm going to share the information you provided with my dermatologist at UNC. Thank you so much.

Permalink Reply by Michjo57 on February 3, 2013 at 3:36pm

When I was first diagnosed my scalp was itchy and I took doxcycline 40 mg once a day for about four months. I have been off of that for about a month and the itching did not start up again. I have been using essential oils for my immune system. I hope with this new med and my oils something good will come out of it.

Permalink Reply by PJ - MN, USA on February 3, 2013 at 10:06am

Michele - I think this is very interesting that the Dr thinks this may be related to an underlying fungal infection. After reading that, I remembered being diagnosed years ago with a fungal infection. It showed up by itchy red bumps all over my body. Just one here and there,nothing like hives. It was many years ago, but if I remember right the comment was made that this would always be underlying in my system. My Dr thought I might have gotten it from my planting soil. Since then, in the past years, I have had a different kind of fungal infection, possibly from an animal at my work. I used topical and oral meds to get rid of it. No one else on this site has mentioned using a fungal medication that I am aware of. I will have to add this to the list of questions for my Derm Dr. I was diagnosed with FFA lichen planiplaris. My current regiment is rotating between DHS Zinc Shampoo and Head & Shoulders classic clean. Using Free & Clear conditioner and Hairspray. I have gotten steroid injections and use Clebatasol 3 times a week on hairline. No oral meds yet.
Keep us posted on your progress! Hope it works for you!

Permalink Reply by PJ - MN, USA on February 3, 2013 at 10:58am

Michele - Just thought of a couple more questions. Will you be taking Griseofulvin long term? If it's an infection, you think this would be just short term. Once the infection is treated, what can you expect? Did the Dr mention anything about diet or vitamins/supplements to take?

Permalink Reply by Michjo57 on February 3, 2013 at 3:32pm

He said I could be on the Griseofulvin for a long time. I go back in six weeks for a check up. I have been trying alternative meds like certified therapeutic essential oils. I have been using melaleuca internally and I noticed my scalp inflammation has gone down. Melaleuca is used as an antifungal oil which is interesting since that is what he thinks I have. I guess Griseofulvin is an old time med that he has used forever. He is an older doctor. I guess the side effects are less than the Plaquenil or methotrexate which I was offered and refused to take because of the side effects. I was willing to forego those side effects and let nature take its course with the hair loss. I was on Zyclara for some actinic keratosis on my back (precancerous sun spots) and that is when all my trouble started. Zyclara activates the immune system to fight the precancerous spots. My immune system went overboard. That is why I am anti-drug therapy now. Since the side effects are less with Griseo, I will give it a shot though. I will keep you posted on my progress. I wish it would be a fungal infection and I might have some regrowth of my hair.

Permalink Reply by Debs on February 4, 2013 at 12:41am

Hello Michele, thanks for telling us all about the meds you are on, the more informed we all are the better. I have just been given Dermovate steriod lotion by my derm but have an appointment to see a Dr that specialises in FFA on the 22 Feb, Dr Harries has already started treating some of the other ladies on this site, however he has not used the anti-fungal. I will ask him about that when I see him. Thanks so much for this info. xxx

Permalink Reply by Camie on March 21, 2014 at 7:37pm

I was also on Zyclara and had a HORRIBLE reaction. This was two years ago--around the same time I think my hairline started disolving--but anyway, I was doing the Zyclara for just a few days and the skin on my lips started to get raw and bloody, like the first layer of skin was decomposing.  I called the doctor because it was so painful and he said to keep it moist with vaseline....really.  I lasted until day 9 of the initial phase and demanded to see him.  He diagnosed me with Stevens-Johnson Syndrome an auto-immune reaction and cause necropsy (I think that's the right word but it means my skin was dieing).  He was so proud of himself but I was in so much pain.  I stopped the drug (it never touched my lips) but it reacted from within. Once I stopped the medication my lips healed and so did my ugly face--it did not help my skin either--I just looked like a monster.  The doctor knew I had many auto-immune issues so why did he prescribe this?  I don't know, he was an ass--just happy that he was able to diagnose something so rare... So, two years later her I am at a different doctor for my yearly skin check and he sees my freaky hairline and says you have FFA!!!  Is there a connection???  I'm not sure but I know that stuff touched my hairline...The doctor that I just saw on Wednesday 3/19 prescribed clobetasol twice a day and will see me in 2 months.  I asked if this had anything to do with Hashimoto's Disease(auto-immune thyroid issue) and he said nope, diet? nope....this is SO confusing but I just thought I would pass on my Zyclara experience with you!  Good luck!!

Permalink Reply by Veronica (Renata) on February 4, 2013 at 3:12pm

HI Michelle
I to think like you, after loosing many people in my life, I feel that this is not the worst thing in my life that I have gone through.
Nonetheless, I don't want to undermine the disease. I have only been diagnosed with FFA on December 2012, but I am sure it must of started in 2010. I have been silent on this forum for awhile, because I went back to the beginning of the forum, with Celia's first discussion.
I read and read everyone's discussion. I also am actively reading studies and as much information as I can about this disease. I am very active in trying to find out where it started from, and I believe so strongly that we are all linked with this disease because of some environment infection that we were exposed to.I believe that doctors have an insight to what it could be. Nonetheless, since a specific medication has not been found, we are being given meds as a trial and error phenomenon.
I am continuosly seeking appointments with different doctors, naturalpaths etc etc
Since I have been diagnosed I have not gone on any treatments that Doctor have recommended.
the reason being, is that most of you who have been on those meds, are at the same level as others who have not. Therefore, when I ask this to the doctors they do agree, that they dont know if with meds or without if there will be any difference.
Therefore, I think someone does have an answer, and the doctor with the answer is probably out-numbered. I will keep doing my research and will keep everyone informed of anything I learn.
Hopefully, as a group we can continue to voice ourselves and continue asking questions, and raising new ones.
Thanks ladies and very thankful, I found you all.
Hope someday we can all meet.

Permalink Reply by Michjo57 on February 6, 2013 at 9:01pm

What do we all have in common? Are we all post-menopausal? Were we all taking progesterone or estrogen? I am having some side effects from the Griseofulvin or Minocycline. I could barely function today at work. I felt dizzy and actually confused. One med I can't take with food. I really hate taking meds since I feel that they were probably the cause of all this anyway (Zyclara cream). I feel if I don't try something though, that I will go completely bald. I don't know what to do. He said my hair probably won't grow back but he can stop the progression of the hair loss. That is fine, but nobody sees my real hair except me and my husband. I can't go out in public with my hair, so should I be taking these meds?? I don't know what to do. I hate how I feel on these drugs. I'm someone who never takes any oral prescriptions except vitamins. I'm giving these drugs a couple more days, but if I don't start feeling normal I may go off of them. I can't do my job while on them. I wish I knew someone who has tried this stuff.

Permalink Reply by ElleMN, USA on February 7, 2013 at 10:35am

Hi Michele, I too wonder if there is something we all have in common. I'm 45 and premenopausal and my dr has mentioned that younger women are being diagnosed with this.

I hope your medications settle down so you can function okay; I'm currently trying to decide if I should stick with getting steroid shots. I've been getting them for a year. Yikes. I struggle with putting more toxins in my body just to keep hair. I'm interested in asking my dr about long-term affects at my next appointment.

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