Replies to This Discussion

Permalink Reply by Jen S. on September 8, 2017 at 8:57am

I am VERY interested to see how it goes.  Diagnosed 4 years ago and taking everything AND the kitchen sink.  I've been scared to stop b/c "you never know what's working".  If you wouldn't mind, please post progress every now and again?

Thanks and good luck!

Permalink Reply by Jacqui on September 9, 2017 at 4:07am

Yes of course Jen, I will let you know how I get on. :)

Permalink Reply by TMB on September 17, 2017 at 8:05pm

I am new to alopecia world and think this is a wonderful place for those of us all in the same boat to share stories and comfort one another as we endure this strange condition.

I have been dealing with AA for almost 20 years. About one year ago I began one of my worst bouts with the condition, started ateroid injections again at that time, etc etc etc for about six months then one day decided I am done with this. My point is dont be afraid to stop all meds. I did and can honestly say I did not get any worse but got no better either. I am now on a regimen of about 7 essential oils that I mix together and rib into my Sal on the affected spots and have been on this for about one month. I think I have some peach fuzz returning. What works for one doesn't work for another but if anyone wants the essential oil revipe let me know. We must all stick together and help one another.

Permalink Reply by Jacqui on September 18, 2017 at 5:17am

I must admit TMB it's nice not having to think about taking meds.  Glad the oils are working for you xx

Permalink Reply by Minter on September 8, 2017 at 9:03am

I've not taken anything really at all for this, I tried- had steroid injections and also had every side effect that is there with the oral drugs-so now I just use Clobatsol as needed, which is not often as like you I am not inflamed at all really, just sometimes itchy & tender.

 I decided in the end not to try with oral medications, number one- because of the horrible side effects, number two, because they don't seem to make a huge difference, it might slow the progression down, but it is going to continue whether slowly or fast and personally, I would rather it happen fast and just burn itself out and get it done with (hopefully burn itself out that is)!    

Good luck Jacq, on whichever decision you make :-) 

Permalink Reply by Jacqui on September 9, 2017 at 4:11am

It's so hard to work out if anything is working at all so I guess this is one way to find out. I have had no side effects to anything  I had been taking (so sorry that you did) but I must admit each time I took them they reminded me I had FFA.  Like you I jut get an itch every now and then.... it was worse on my eyebrows but not anymore as there's not much hair left there now :/

Permalink Reply by Airam-FFA on September 9, 2017 at 8:04am

This is an interesting one. I was diagnosed last November but had had hair loss for three or four years before diagnosis. I only used Dermivate now and again as I didn't have that much itching but I was still losing hair from my fringe and in front of ears. For the last two weeks I have been washing my hair daily with Clobetasol shampoo followed by mometasone furdate scalp lotion. I have noticed that I seem to have lost quite a bit more hair over these two weeks, also, I have more itching! I wonder if this is the medication or whether I would have lost so much more hair anyway without the new medication.

Like you Minter, I just want the FFA to burn itself out sooner rather than later, and therefore wonder, if taking medication will prolong the burnout, or bring it forward!

Not sure what to do for the best ... to medicate or not to medicate?

xOx

Permalink Reply by Jacqui on September 10, 2017 at 10:01pm

It is an interesting one Airam-FFA, it's hard to tell what is actually working!

Permalink Reply by Jules Australia on September 9, 2017 at 10:09pm

Hi Jacq, Minter & all in the group, you're right, the decisons on whether to medicate or not are hard ones....I personally (have had ffa/lpp for 5yrs now and its still the monkey on my shoulder) have chosen not to take any of these meds, most of which seem to be fairly harsh drugs with potential serious side effects. The awful scalp dysesthesia of burning, pain & tenderness hit me suddenly end sept 2012, followed soon after with itchiness & hairloss from front (along forehead,temples, in front ears) also......first 6 months was horrendous......i .also experienced an eerie creepy crawly sensation on scalp espec top front area......have had tiny sore little pimply like papules all over scalp as well (on & off)....... but from about mid 2014 to march 2017 the loss was very slow & while i experienced a certain amount of itchiness & scalp tenderness it had calmed dowm considerably & become much milder than during first 18mths to 2yrs. So much so that i was feeling able to cope much better, emotionally, than the first couple yrs (when symptons were more continually persistent) that i went off the anti depressants presc when the symptons first started in 2012. I have NEVER used any of the proposed medications........then 'out of blue',( for no reason i can ascertain), the pain, tenderness with lots of very sore little papules hit me, along with more shedding than normal, notable loss which followed (esp top front, temples, around ears). For the most part I haven't experienced much increased shedding (other than initial onset 2012 & return of  more acute symptons 2017 for several weeks/mths); mostly its just  been a very slow progressive chronic hairloss (without any noticeable increased shedding).....i guess thats the nature of this disease, as the follicles are slowly destroyed.  So it's just so difficult to know whether medications help or not.....there seems to be no real conclusive evidence in research of the efficacy of these meds in treating symptons & controlling hairloss.... but i respect that everyone has a different approach needing to tackle this ghastly disease each in their own way, some of us having different experiences to others, while at same time many similarities btween us also.........i tried to avoid it, but since increased discomfort of symptons & continuing hairloss hitting in march 2017, i've been back on anti-depressants..... i am so healthy otherwise ( apart from the way in which this horrible disease,at times,plays havoc with a persons 'peace of mind' & general sense of well being)......sometimes i find the symptons hauntingly bizarre, & more of a life's challenge  than i ever expected to deal with.......having said that i hope all goes well for you jacq without the meds (& everyone else, however you choose to deal with it).........thanks for listening.......don't know what i'd do without access to this forum............. jules

Permalink Reply by Airam-FFA on September 10, 2017 at 2:55am

Hi Jules

I am sorry that the symptoms returned earlier this year - this condition is very cruel. I would love to know how/if 'burn-out' can be brought on.

xOx

Permalink Reply by Jacqui on September 10, 2017 at 10:05pm

Hi Jules. I ma in Australia too (in Adelaide).  I am sorry that you have had flares, it's so frustrating.  I guess we will see if Cellcept worked for me if things worsen.   I am not really trying anything else as far as diet etc so it should be a clear indicator I guess. 

Glad you found the forum, it's a great support to us all. xx

Permalink Reply by illustr8r on September 10, 2017 at 3:30am

I'm only using Clobetasol once or twice a week. When I had my flare up in February it really helped to settle the pain spikes on my scalp. I had been losing hair prior to that without any pain or scalp problems. I decided against taking Plaquenil for various reasons I've written about before and I still feel at ease with that decision.

My hairstylist has another client recently diagnosed with FFA and she is taking every topical and pill known to man. She is in a high stress job which doesn't help this condition. Her meds just seem to be making her sick but the hair loss continues.

I started the AIP diet in July and feel remarkably better. The hair fall has slowed to where I'm not aware of it like I was. I have new hair growth on my widows peak where I feared the FFA was moving. My left side temple looks better. My right side is the thinnest and it looks the same-which is better than getting worse.

Best wishes to you as you cope with this stupid stupid disease!

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