Hi all, I have only this week been told by a dermatologist that I have FFA and my only options are to take a product called Hydroxyxhloroquine or go progressively bald. In reasearching this it is a an anti inflammatory and immune suppressant.  Some of the 'worst case scenarios' side effects are kidney and liver damage, heart damage, retinal damage and immune suppressant issues.  Needless to say I am not comfortable with this.  Has anyone out there in the FFA community taken this product for any length of time? Or perhaps seen a naturopath for alternative options.  Any anecdotal advice will be greatly appreciated 

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Hi jam, I’m sorry you have been unfortunate to get this awful disease.  I was just diagnosed last October. I don’t understand why you were only offered the hydroxyxhloroquine.  There are more options. But the one that I have been using is clobestasol. It’s a topical solution.  It has cleared up the inflammation and stopped the hair loss from the ffa. I use it now 3x a week around the hairline from top of forehead & around the sides & will continue until I see the dermatologist in a year,  (just saw her again in June). I have posted more specifics before, if you want to read just go to my name & you can read it there,  good luck, don’t give up.

Hi @JAM, welcome to the group and I am so sorry you have to be here :-(  I don't have any advice on Hydroxyxhloroquine, (sp)?   as I never took it.  I did do a series of steroid shots  after first being diagnosed with FFA and used Clobetasol for the itching/irritation on the scalp.   But after doing (a LOT) of research both on this forum and online, I decided not to go with the prescribed medication route as there doesn't seem to be any one cure or anything that will definitely stop the progression of FFA so why put my body through the risks of side effects.

I now try and eat healthy and take supplements and use essential oils and witch hazel (after reading through the CARF notes) to control any itching or skin irritations and yes, I still have hair thinning and the FFA is progressing, but is it going any faster or slower by not taking prescribed meds? Who is to know? I do know I don't have any of the, sometimes very bad, side effects to worry about.    

I am really sorry you have to go through this stupid disease called FFA, but read, read, read and learn as much as you can as you will have to be an advocate for yourself with this disease as some doctors really do not know much about it.  

There is a huge amount of information and knowledge here, especially the notes from the recent CARF conference.  Ask any questions you have and also if you need to vent and or complain or whatever do it, as this group is so nice and welcoming! The best thing I did in regards to this disease (and my sanity) was to join this group, they are fantastic :-)  

Thank you minter, I shall continue to read everything everyone has to offer on this subject and who knows somewhere down the track someone will have some joy getting on top of it.

Hi JAM,  I'm sorry you have this damn disease, but glad you've found this site. Having been diagnosed 2.5 years ago, I'd say the very best info I have gotten is from here and research on my own, NOT from the western med docs, even those "specializing" in hair loss. After TONS of research, here are my best pieces of advice: 1) Go on the AIP (Autoimmune Profile) diet. Whether you show positive or not for autoimmune factors, your body is attacking itself in the form of messing with the oil/follicles in this bizarre pattern. I started the diet 3 months ago (and it is totally do-able! 'Just need to get through the learning curve); not sure if it is that or the Accutane or the Actos (yup, I take 'em all, no side effects and watching self/labs often) or some combo, but my inflammation and loss quieted, stopped AND hair grew back on my forearms! I mean, not that I am excited about hair on my arms, but those puppies were BALD along with some of my brows and frontal hairline. Along with the AIP, look into supplements to help heal a leaky gut which you presumably have. 2) Get on Accutane 20mg daily taken with fatty food. Research shows appx 75% of those taking it halted hair loss after 1 year (I started 11/1/17 right after the Poland study was released...and I always add a BIG thank you to Jess for sharing that!) 3) Get your labs checked for ferritin and Vitamin D and DO NOT settle for the low-range normals...we need to see D over 60 and Ferritin over 70 IMO. 4) Stop using products with chemical SPF period. Some of the offending chemicals are also in various skin/body care products. (I've gone all natural on skin/body care using skin care and make-up made by a trusted local herbalist.) For sun protection check the EWG website/app for safe sun protection. 5) If I had a dollar for every concoction I've tried on my hairline! For now (I am scared to stop even with no new loss or inflammation!) I like a few mls quality, pure aloe vera gel, a few mls pure witch hazel and a drop of rosemary and 2-3 drops lavender. I use an eye dropper or pipette and squirt onto my hairline and gently work into hairline and brows. 6) Ask about oral minoxidil. This is an odd one, but... due to my Raynaud's (hand and feet circulation issues) my rheumatologist was going to put me on the usual nifedipine (pill to dilate the vessels) but instead, due to the FFA, chose ORAL minixodil (7/2017) and my brows have grown back some! 7) Do what you need to do to get sufficient sleep and keep stress levels managed. 

FYI's: 1) I am reading Dr Terry Wahls...fascinating and I believe vital info...I am phasing into her diet. The science behind it is fantastic and I believe spot-on! For starters, check out her TEDx talk

2) I have been on plaquenil since the day of diagnosis. Who knows if it has had any impact (after diagnosis my hairloss was stable for 1.25 yrs). No side effects; retinas checking out just fine.

3) Please note that the first 8 months after diagnosis I was gluten free. It was harder the first time I did it and my "hair loss specialist" doctor said meh, if it hasn't done anything for you then I say no need to keep on it. Hmmm was that part of the resurgence in hair loss 6 months later?)

Hoping the best for you!!

Pauliegirl that is a lot of valuable information and thank you for sharing.  I am looking into seeing a tricologist and will take all information into consideration before leaping into anything.  In the meantime I am working on my gut biome and also make my own moisturiser using coconut oil as the base.  Have had my hair cut into a short pixie style no this is aiding disguising the loss, now would love to have my eyebrows back.  Guess it does not matter how old we get, those things are important.  Will let you know how I get on and again, thank you.

Hi JAM, I’m so sorry you have this darn FFA too! Be sure to read CurlyK’s CARF Conferene summary and the responses. Lots of information is included there. I’ve had FFA since 2009 (I think it was diagnosed in 2010, but that was after I’d lost temple hair, eyebrows and most of body hair). Anyway, I went on Hydroxychloroquine for about 2 years and it stopped the hairloss and itchiness. I had no side effects that I could detect anyway. I did get a flare recently and am on finasteride to be sure there’s no more hair loss. I’m not crazy about being on that either. I also used Clobestasol for about two weeks. Finasteride is the generic of Propecia. I’ve always eaten lots of fruits and vegetables, olive oil, more of a Mediterranean style diet with very little junk food. I’m not sure how much diet affects FFA although I think a lower inflamation diet does make sense. One thing I noticed about this flare is that as soon as I stopped using chemical sunscreen, the extreme sensitivity around my hairline and ears stopped. Usually, I use a hat when I’m out in the sunshine and I use a zinc/titanium oxide sunscreen if I’m going to be out for a while and can’t get into the shade. However, my skin does get some sun on it. Anyway, apparently your skin doesn’t make vitamin d when you use a sunscreen of even 8 or 10 spf. I’m wondering if that lack of sunshine —- longterm is actually not very healthy and might make people vulnerable to autoimmune (and possibly FFA) diseases. Anyway, you wouldn’t have to take the Hydroxychloroquine forever. There are other options and .... good luck and maybe we’ll figure out something better than some powerful drug with side effects! 

Hi Danab2, thank you for your response and also for letting me know about your experience with hydroxychloroquine.  I may still go that path but I am seeing the tricologist in a fortnight and perhaps learn a bit more about my options.  As you probably gather from my earlier post I am not keen on medications.  My own worst enemy maybe.  Am taking my husband along to my appointment with the tricologist as my memory not the best and four ears better than two for taking in all the information I am sure will be tossed my way.  Will let you know how this works out.

I was diagnosed in March, I feel certain my FFA was brought on by Juvaderm injections.  My autoimmune started attacking my cheeks then my hairline started getting bumps.   

I tried steroid injections, a waste of time.   I have dimples along my hairline, my dermatologist says those will go away.   

I am now starting the drug you mentioned.  It is a generic version of Paquenil, I believe.   I recently had blood work to assure I am capable of taking this drug, have a current eye exam and have to have one every six months, and have a CBC blood scan every month for three months, then every 6 months.   The only good side effect is possible weight loss!   

I am wollinv to try keeping my hairline with proper supervision.   I wish all of you ladies LUCK.    We are plotting our own destiny, hopefully others will learn from our mistakes and successes.  

Hi Bubbalu! Thanks for sharing...

I'm faced with taking the Plaquenil and trying to weigh the pros/cons. Did you doc do a good job of selling it to you? Did doc say it's known to be successful so definitely try it. My doc is so blase and non-commital...and she's the freakin' expert here in my city, so....I'm stymied. I want to keep as much hair as possible, but freaked out about the possible consequences of such a powerful drug with all the required testing. Thoughts?

Farrah,

My doc seems to be very thoughtful, smart.  There really is not a lot known about how to treat this nasty disorder.  We tried 2 rounds of steroid injections, really no help.  I have indentions in my scalp but doc says they will go away.  Only on Plaquenil 3days so I cant say much about it recommended to take it in the morning, maybe it makes you hyper?   Also the instructions say it can cause weight loss - I would be okay with a little of that!

i have to have CBC blood work checked every month for first 3 months, then every six months.  I have an eye exam (you can possibly get crystal deposits in your eyes) every six months.   

I feel these are precautions i can I can deal with.   If I get negative reviews I will stop.  But I am willing to try anything.  

I am also trying CBD oil  (THC extract) on my hairline.   I have not seen any noticeable difference but it is worth a try.  

I am also on the Keto diet which is good for auto immune disorders.   

I’m not losing this battle without the best fight I can give.  

Thanks so much for your reply, BubbaLu! Are you also using Rogaine or taking Propecia? I just read about the CDB oil approach....sounds promising. 

I think I went into a little round of denial thinking that this thing isn't going to get worse, so I put off the Plaquenil. That prolly wasn't smart but I'm here now so I've gotta stop this sucker with the whole kit and kaboodle! Good luck with all of your treatments. 

Hi everybody! I sure could use some advice. I was diagnosed with FFA about a year ago. Initially, my recession was fairly minimal, but distressing nonetheless. I had already lost all of the hair on my arms and legs, and some from my brows. My FFA specialist here in L.A. put me on a combo of topical Rogaine, Fluocinonide topical solution and a compounding cream (Tacrolimus .1% and cetaphil lotion). I did not wish to try the Plaquenil at that time. For awhile, it seemed that my hair loss was not getting worse, but about 4 months ago, the HIDEOUS INSIDIOUS little monster woke up and now I have more loss at hairline and it's really making inroads at wiping out my brows. #permanentmakeuphereicome  Went back to doc last week to ask what else I can do. It's amazing how I have to pull recommendations out of her...frankly, she's awfully blase about the whole thing considering the ENORMITY OF THE SITCH! Anyway, she said I can try the Plaquenil...not you really MUST try or SHOULD do...but yeah, you can try it. SO, with this overwhelming endorsement I'm left with my desire to HALT this bloody thief in it's tracks and a major ANXIETY over taking such a toxic medication. The sideFX are very scary...all I need now is to end up BLIND and bald! Can anyone please weigh in on the PLAQUENIL DO OR DON'T issue? I'll do just about anything to stop this short of compromising my long term health. I'd be GRATEFUL for any advice you can muster. THANKS & good luck to all!!

p.s. Forgot to mention that about 6 months ago I started on Propecia. I think my hair loss has gotten worse since then...is that possible??? Also, I will admit to being a bit inconsistent with the use of the topicals...I mean, can I just have one freakin' night with that clean scalp just washed feeling?! Of course, that attitude hasn't saved any follicles so...

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