Replies to This Discussion

Permalink Reply by Classical Anne in NC mountains on February 11, 2015 at 12:44pm

Hi Blondie -- it's pretty common for folks to have a fairly significant shedding soon after starting Regaine [Rogaine in the US,  minoxidil generic].  Then, some weeks later, several ladies have reported a good amount of new growth in the unaffected areas, making their hair thicker overall, and maybe easier to cover the balding areas.  But it's true, NOTHING can make it grow where the FFA is already active.  When those follicles scar over, that's the end of that. There is some early talk on possible stem cell transplantation, but there are strong and dangerous drugs involved with that procedure. 

 Realizing [and accepting] that there is no way yet known or understood by the medical profession to regrow the FFA affected areas [and because I'm already on a significant number of other meds for some serious autoimmune disorders and diseases], I chose to do nothing other than the non-systemic scalp injections.  I do think that has seriously slowed the progress, but nothing is going to stop it, let alone reverse it.  Rogaine is great, however, for your eyebrows.  I don't understand why they can regrow, when your scalp hair can't.  But that seems to be the way it is.  You're likely to be one of the luckier ones, since you caught it and acted early.  You should be able to prevent the extreme loss that women who try to ignore it have experienced, and you may even get it to stop progressing if you're keeping the rest of your scalp healthy.  At the very least, you will slow the progress.

Hope this helps -- Best wishes,

Anne

Permalink Reply by Sas Holland on February 11, 2015 at 1:15pm

Hi Blondie,

When I asked my derm about using Rogaine, he said it was just a waste of money, because it only works on the male hormones baldness not att al;l for FFA. All it would bring would be some babyhairs, that's all he said. I could use it if I wanted to throw away money (so no danger warning)

Permalink Reply by Sas Holland on February 11, 2015 at 1:23pm

I only later read Anne's comment.

Yes I wanted to have the stem cell transplant, which is done here in The Netherlands, but I backed out, because I would have to take very high doses of Cyclosporine A for 6 months. Otherwise they won't do it on FFA patients.

I did not want to put this strong medicine in my body, just as Anne said.

Permalink Reply by Donelle on February 11, 2015 at 2:02pm

Hi Blondie and welcome to this forum.  I have been dealing with FFA for a number of years and from my experience Regaine is the ONLY drug that has made a noticeable difference to my hair loss.  I apply the foam to the bald areas, where there is no hair left to fall out.  The hair follicles that have been destroyed by the FFA will never regrow but among the burned out hairs are some that are not yet dead and they can be revitalised by the Regaine.  In my case this made a huge difference and now I have some wispy hairs where before was just uncommonly shiny and smooth skin.  It has also made the remaining hair on the margins thicker, which means you will have more hair to cover the bald spots.  I am wondering whether your dermatologist has experience treating FFA.  In case you would like a different opinion, I recommend contacting Dr Ali who runs the Hair Clinic at Charing Cross Hospital in London.  She takes NHS patients from all over the UK.  I live in Wiltshire and happily make the journey to London to see her.  

Permalink Reply by Alice on February 11, 2015 at 3:29pm

Both dermatologists I saw, one in private practice and the other involved in FFA research at a university, recommended Rogaine.  It has made a big difference for me. My hair is much thicker and easier to style and, like Fonelle, I am seeing some fine wispy hairs along the front hairline and temple. Some researchers think FFA msy be male hormone related and prescribe testosterone lowering drugs. I'm taking spearmint instead.

Permalink Reply by NatalieW on February 11, 2015 at 4:58pm

I agree with Anne - it certainly works on eyebrows! I don't know about the hair on my head yet as haven't been using for 6 months yet, but if it thickens up some of the surrounding hair, then that is great. I didn't notice a big shed when I started using Regaine either, just a small loss, nothing compared to my FFA. I figure it is worth a try, especially as some of the other ladies in this group have had success with surrounding areas that then make the cover-up job of the balding bits a bit easier. good luck with your journey

Permalink Reply by sallylwess on February 21, 2015 at 7:05pm

Natalie, I am wondering if you had a lot of flaking of the scalp when you started using Rogaine.  I am have a lot of peeling, and flaking.  

Permalink Reply by NatalieW on February 21, 2015 at 8:40pm

Hi Sally. No I haven't had any flaking on my scalp. I have always had small white bits that flake off and then lose that hair with my FFA. I do find the Regaine irritates my scalp a bit but the Dermol keeps it under control

Permalink Reply by MJ on February 21, 2015 at 8:55pm

Sally,
I had alot of flaking when I first started Rogaine. I was using the liquid drops. I now use the foam which I find easier to apply. I don't get the same lroblem with it. I still have some white scaling, but I think that is from the FFa.
MJ

Permalink Reply by MJ on February 11, 2015 at 6:45pm

Blonde,
I cannot say for sure the rogaine has grown hair other than the eyebroes, but I waa told by my derm that the idea is that it feeds the follicles in the margins of the ffa area to help counter the ffa, thereby keeping follicles alive that would npbe destroyed by the FFA. I do remember having some shedding after initially starting, but not after that.
Mj

Permalink Reply by Jules Australia on February 18, 2015 at 7:46am

Hi Blondie, I can also relate to everything in your reply sent to me on 11th Feb (Jules Australia). I am not on any meds; thought about plaquenil for a while but decided not to take it (concerned about poss eye toxicity side-effect) and just don't want to risk it; have had good health all of my life (56 now), have always eaten well, never had weight problem (small build), & have exercised for most of my life (played tennis, do yoga, walk/exercise group etc).  Like you, somedays this disturbing chronic disease gets to me, but i also try to get on with it, so to speak! I have had a lot of uncomfortable pain (tenderness sore bumps, wierd creepy-crawly sensation, itchiness etc) over the past 2 & half years with this, which almost feels worse than the loss. I also diag myself with ffa/lpp ( as was confirmed by Biopsy). When i suggested to the first Derm I was referred to that I felt my symptons pointed to ffa she said to me " I see lots of patients with that & you don't have that", among some other ridiculous comments; she insisted I had seborrhic dermatitis just from my explained scalp pain/feeling. I had no visual symptons on my scalp to indicate SD. I believe, from the research I have done that rogaine has proven ineffective for ffa. However, everyone seems to have slightly different experiences with this disease & you never know what might work for you. Unfortunately noone can tell us how long it will go on or how much loss each person will have. Scientists still doing research, a lot of unknowns still to be conquered with this disease! Best of luck with your situation. It,s great to have this site for support & to discuss our problems - Maybe if some of the Doctors & specialists had a browse through comments on here they would learn a little more about the symptons of ffa/lpp, giving them some clues on how to make a more accurate diagnosis. Many of them just don't do there homework or really listen properly to their patients,and many women seem to go either misdiagnosed or undiagnosed, some for many years, before finding out they had ffa/lpp all along. I had never heard of it until I researched my symptons (getting no help from visits to GP/Secialists) and diag myself with this within about 4 weeks of the onset of unusual pain/hair growth changes.But only found out for certain 7 months later by visiting a Second Derm who looked at my scalp and said the only way to find out for sure was to do a biopsy. Sure enough, unfortunately it was confirmed!    

Permalink Reply by MJ on February 18, 2015 at 6:42pm

Hi Jules Australia,
Just curious, given how healthy you are, if you have any suspicions as to what triggered your FFA? Many of us point to a period of intense stress or doses of antibiotics omeprazole, leaky gut possibilities or other things. This crazy disease just boggles the mind!
MJ

• ‹ Previous
• 1
• 2
• Next ›
• Page