Comment

Comment by Mike'sDeb on December 4, 2014 at 3:01pm

I am with you Kathy...doing my best to approach it from as most of a natural lifestyle approach as I can. I was diagnosed this past June but we think my highly active time was at least a year ago. I have thinned out brows and have lost about an inch of my hairline. Since I am premenopausal and hypothyroid (since age 16)...I am inclined to believe my cause of this autoimmune disorder is environmental and the last thing I want to do is add potent drugs to my body for a condition that is not life threatening. I have experimented with makeup for the brows and different hairstyles and so far so good. I certainly wish I didn't have this disease but considering what others have to deal with I have learned to accept and adapt. I been on rogaine for a few months and at the suggestion of my hair stylist I have started a shampoo system from redken that also has minoxidil. When discussing this disease with my kids they reminded me that it can only be seen if someone is "in my face" and to those that are in my face it does not matter. I know everyone has to be comfortable with their decisions...best of luck to all!

Comment by Kathy on December 4, 2014 at 2:07pm

I've been reading some of your posts about starting cellcept. I'm having a hard time understanding the logic of taking an immunosuppressant when there's still the idea that FFA might be an autoimmune issue. Call me crazy - but it just doesn't make sense to me. Course I'm not a doctor ;)  For myself, I've decided not to take an oral meds for my FFA. I continue to work on my diet and supplements along with a topical prescription and Rogaine. Plus working out and keeping my stress levels in check. My naturopath has me doing a treatment a couple times a week (when I remember) of almond oil with Rosemary oil drops added to it. Seems to keep the scalp irritation at bay.

Comment by jess on December 4, 2014 at 1:14pm

This post is to C.  I went to the derm today and they want me to take cellcept also.  what dosage were you prescribed?

Comment by Sas Holland on December 2, 2014 at 11:25am

Hi Jess, they say I need to take twice a day 200mg, so that's a high dose.

I still have not heard back from them yet, which gives me more time to think it over though.

Comment by jess on December 2, 2014 at 11:16am

Sas what dose of cyclosporine do they want you to take? Also have you heard back from the HSI about the other FFA patients. I am only 33 and have had FFA for 2 years. I have lost all my eyebrows and lots of hair, I think my eyelashes are starting to go :( after reading Rebecca from Germany's comments, I think I am going to ask to be put on cyclosporine

Comment by Alice on December 1, 2014 at 1:51pm

Pam, I aldo hsve redness and itching while on plaquenil and have cut my dose to see if it makes any difference. If not, I plan to discontinue it. 

Catherine and Rebecca, do you know whether cyclosprine comes in a topical form? I believe it's the same dtug that is in the Restasis drops I use for dry eyes. I'm much more inclined to try something that is not systemic.

Comment by Catherine on November 30, 2014 at 1:31pm

Thanks Rebecca.

Comment by Catherine on November 30, 2014 at 12:59pm

Hi Rebecca, I will probably start a course of Cyclosporine this week, and I was told that I will need regular blood tests. How often do you have your bloods checked? I was also wondering how long you think you will be on the drug (I see your doctor said you could take it long term)? My doctor has suggested that I take Cyclosporine for 6 months then switch to Cellcept.

Thank you so much! Catherine 

Comment by PamW San Diego, CA, USA on November 30, 2014 at 12:45pm

I agree but I think that my doctor wanted to try everything first before using heavy duty drugs. Can you remind me one more time about your dosage? I am visiting the dermatologist on Tuesday and want to ask about cyclosporine. Also, does it take time for it to build up in your system before it begins to work?

Comment by PamW San Diego, CA, USA on November 30, 2014 at 12:08pm

Thank you for the quick response. I still have itching and burning with Plaquenil, which Insuppose means that it is not working. So, I am not sure why I continue to take it. I would prefer to try something that actually works. Have you noticed any regrowth?

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