New Member

Hello everyone,

Unfortunately, I think I accidentally sent each member of this group an email message. I'm sorry, as I was trying to start a discussion, so please accept my apologies. I am newly diagnosed with FFA a little over 3 months ago. I am currently being treated by a dermatologist in my area, taking 200mg generic plaquenil twice daily, and using 5mg Rogaine once daily. I am also receiving injections to the affected area every 6 weeks. My hair loss started a couple of years ago, but I started with a very full head of hair, so it wasn't until I noticed the band of hair loss on my upper forehead and above my ears, that I became concerned and decided to seek treatment. I am hopeful that treatment will help. I know it can be a long process.

 My scalp itching has worsened greatly very recently, and is to the point of being almost intolerable. It is not only on my scalp now, but has moved to parts of my body. My back, hips and stomach have a faint rash, and the itch is keeping me up at night. I have been taking benadryl or allegra daily since the severe itching started, but I hate the way I feel (foggy) when taking these medications. My next appointment is 3 weeks away, and I am trying to wait it out until then. Has anyone experienced these symptoms, of the scalp itching  suddenly worsening and moving to the body, and if so, what treatments have you tried that have helped alleviate the itching? 

Thanks so much for your willingness to share your stories. It helps me to know that I am not suffering through this alone.  ~ Lynn

PS: I too would like to receive the FFA Fact Sheet. Many thanks

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Replies to This Discussion

Permalink Reply by Marian on January 23, 2015 at 3:48pm

Pam-I take .5mg per day.  TrayG-After hearing Avodart mentioned on a few posts I started to look into it on the web.  I brought the info and articles to my Derm and asked him about it.  He hadn't really much knowledge about this treatment but after his reading of the articles he agreed it was worth a try. I think my diet helps in all aspects of my health but I don't know if it can halt the run away train that FFA is. This seems to be a fairly new option so no long term studies are available.  If you google Avodart and FFA and look for research articles by respected sources then you can see if the risk reward is worth it to you.  

Permalink Reply by TrayG on January 23, 2015 at 3:53pm

Thanks Marian - I will look into it....I wanted to get to the point of halting all medications in general just because I think taking too much causes other issues, but when I see all the hair loss, I'm not so sure what to do??  I'm glad you have found it seems to be working for you!   All the best! :)

Permalink Reply by PamW San Diego, CA, USA on January 23, 2015 at 7:28pm
Marian, I started Avodart about 6 months ago, but only take it one time a week! My doctor started me off with twice a week for a month and then .5 once a week! For those that are interested, there was a study out of a Duke University which says that to date, Avodart proved to be the most effective for halting or slowing the hair loss.
Permalink Reply by Marian on January 23, 2015 at 8:12pm

I just double checked the JAAD article and it was using .5mg per day in their study.  Are you having success at the dosage you are on?  I'm all for lessening the dosage thus lessening any side effects if it is working at a lesser dose. I am 54 so the protocol may be different if you are pre-menopausal .  

Permalink Reply by TrayG on January 25, 2015 at 12:14pm

Hi Marian - just one quick question....are you seeing re-growth where hair was lost from your FFA?  I just want to make sure I understand as I was under the impression with this condition when you lose the hair, there was no chance at re-growth.  Thanks for clarification when you have the time and have a great day!

 

Permalink Reply by Lynn on January 25, 2015 at 2:20pm

Hi Marian,

Thanks for the info about the whole food diet. I will definitely be checking into that. Do you consult with a nutritionist for the whole foods diet?

Lynn

Permalink Reply by Annie on January 23, 2015 at 10:38am

Lynn, I also have itching all over as well as what I can only describe as crawling sensations on my arms & legs.  I agree with PamW that it just seems to come with the other ffa symptoms for me.  I currently have itching at the back of my hairline and on my neck that makes me fear the ffa is spreading to that area.  There are days when my forehead itches and I think the ffa will creep down to my eyebrows, which haven't been affected yet.  I have noticed that when I eat sugar, wheat, or egg products the itching is more intense so I try to avoid them as much as possible.  

Permalink Reply by Lynn on January 23, 2015 at 1:33pm

Hi again, I  just wanted to let you all know that I was able to make an appointment with my dermatologist for this afternoon. Hopefully I will get some answers about what is causing this awful rash all over my scalp and body. 

I have another question for you guys-is there a specialist that any of you know of that is on the cutting edge of treating this condition? I love my dermatologist, but have been considering exploring options for a second opinion. My husband thinks I need to do this. I was hoping there is a specialist that some of you might have experience with that you could recommend. I have also thought about Mayo Clinic, but a couple of months ago when I looked on their website, there was very little info, if any, about Scarring Alopecia. I really feel like I should have a very thorough exam to cover all areas of my health, to be sure I don't have any other health issues, such as Lupus like Marian mentioned she has, in addition to FFA. I was thinking Mayo might be the best and most thorough place for this. Any thoughts?

Many thanks again to everyone who has replied to my questions and concerns. I really appreciate all of your insight.

Permalink Reply by Annie on January 23, 2015 at 4:06pm

Lynn, I just noticed that you are located in Fayetteville Arkansas.  I'm in Springfield MO, which practically makes us neighbors.  I think you live closer to me than anyone else I've noticed on this site.

Permalink Reply by Debs on January 25, 2015 at 12:31am
Lynn, please re-read my post concerning my fact sheet and email me at the address given

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