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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?

Comment by PamW San Diego, CA, USA on November 30, 2014 at 11:45am

My mistake. Sorry! How is the cyclosporine working for you? How are you feeling?

Comment by Sas Holland on November 30, 2014 at 5:46am

hi Everyone,

I wish more of you uploaded an profile picture, because It would really help to see how others are coping with this. If you have a wig or hairpiece and how that looks or if you still have your own bangs to cover it or how other eyebrows  look with tattoos or make up.

have a nice sunday!

Comment by PamW San Diego, CA, USA on November 29, 2014 at 4:22pm

Celia, I am almost positive that Rebecca from Germany has been using cellcept these last few months with positive results. Perhaps you can look back on her comments. Good luck and let us know of your decision.

Comment by Classical Anne in NC mountains on November 29, 2014 at 2:15pm

There have been some wise and courageous ladies commenting here.  For the sake of the new folks I'm repeating myself. I, too, rejected all internal medication since diagnosis 18 months ago.  I have been very satisfied with the non-systemic steroid injections, every 6 to 8 weeks, which really kept the loss to a minimum.  But as anticipated, I'm now having a lot of female pattern thinning throughout the top of my head, which is competing with the FFA loss at the hairline.  So, I now have 2 wigs which I love, and find very liberating!  My eyebrows actually disappeared close to 4 years ago.  In the last couple months I have added topical minoxidil to my brows in the morning and was happy to see any regrowth, but way too late to expect a full comeback.   But there are just enough sprouts to make my eyeshadow coloring of the brows look convincing.  Overall, I'm very much at peace with it now.  I wish the same for all of you!

Comment by Celia on November 29, 2014 at 1:42pm

Hello ladies - please let me know how you have coped with Cellcept if you've been on this. Thanks.

Comment by Sas Holland on November 27, 2014 at 2:24pm

Hi Lexi,

yes it's the HSI in Holland indeed. My FFA is in remmission thats why my dermatologist says I can do this, allthough I must take Cyclosporine for about 5  or 6 months. I still did not plan the test transplant though. I still await a phone call of them  with the answers to my questions how many women with FFA have they treated, how long ago was that and how many have kept the hair afterwards for how long.

Also after reading the replies of DebfromCA, Jen, Sad and Rebecca  I have doubts again whether to do this at all. It such a difficult  decision. It's the Cyclosporine that I really hate to take. I don't feel sick now and my receding hairline is not so bad that I cannot cover it with my curly bangs any more.

I can't help you with your pregnancy questions,, sorry, but wish you all the best and hope you don't worry to much, but can enjoy the pregnancy.best wishes!

Comment by Lexi on November 27, 2014 at 4:53am

Hi sas , I read your comments about the stemcell u might b trying out soon, with HSI, is it the one in holland? I had contacted them last yr, and was told that unless it is in remission I cannot go ahead . So basically I'm hoping my FFA will soon stop. And I will deffinetly go try . But for now seems I still have to wait . For me I feel its maybe some hope, but I don't know anyone who did it, although they (HSI) told me they did have patients . I wish u luck and hope it is successful so then u can do the whole treatment. Good luck .

Also I would like to ask , did anyone here get pregnant while having FFA? As I'm pregnant , I'm 38 , have had FFA for 7yrs now, and am a bit worried, so far I'm 30 wks preg and my baby is 3wks bigger than it should. Also have lots of excess fluid. I'm bit worried that its my FFA that's causing this. My dr is doing further blood test at moment to look into the problem of the baby growing bigger and excess water. I'd appreciate if anyone can share their experience if they had a pregnancy while dealing with FFA

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