akb
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  • Chicago, IL
  • United States
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Liz Lov replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi Pif, Yes HUGE gut symptoms, bloating, not 'regular' etc. Diagnosed with leaky gut. I read as much as possible , great book is this one by Dr Michael Mosley " The Clever Guts Diet: How to Revolutionise Your Body from the Inside…"
19 hours ago
Plf replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi illistr8r & Liz love, great to have open dialogue, at the moment I am being brave..but also realise I am heading down the path of wigs and microblading eyebrows.  At that stage I look forward to your "wig wisdom" Liz, as…"
21 hours ago
Liz Lov replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi illustr8rI also was late getting diagnosed and decided against meds that most likely wouldn't work for me anyway. I've lost so much hair it looks ridiculous! BUT THAT made the decision for me that I would wear wigs- full time and my…"
yesterday
illustr8r replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"@Beez and PFl Thank you for your comments about being medicine free. I question whether I should have done more-like getting the steroid shots or trying Plaquenil-but my gut told me it was useless. The side effects are worrisome and exaggerated in…"
yesterday
Plf replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Well said Beez...at this stage no meds for me either...but being positive some days is hard..but to many great things to celebrate in life to let this horrible condition get you down"
Friday
Beez replied to akb's discussion Treatment cycling back: intralesional steroids in the group Frontal Fibrosing Alopecia
"Hi akb! The problem with knowing what 'stage' we are in with this damn disease is that many of us had it for awhile before we either decided it was time to see a doctor or even more commonly (as in my case) went from doctor to doctor…"
Friday
akb added a discussion to the group Frontal Fibrosing Alopecia
Thumbnail

Treatment cycling back: intralesional steroids

I've been reading more about them, especially since my latest derm, whom I really like, says that she has had success with them for FFA sufferers. I refused them after I was first diagnosed (in a pretty early stage) last spring, although if the dermatologist who diagnosed me had suggested them I might have tried; only a later dermatologist whom i saw about diffuse scalp pain suggested them, and by then I had heard so many horror stories of head dents and atrophy. I had resigned myself to…See More
Friday
Plf replied to akb's discussion Some questions in the group Frontal Fibrosing Alopecia
"Thanks Jean, great to hear some good news, 10 years seems forever, hang in there Annie may, your not alone, I know that doesn't help much, hope you have something nice planned for the weekend, take care"
Feb 9
AnnieMay replied to akb's discussion Some questions in the group Frontal Fibrosing Alopecia
"Thank you for your message! I'm having a bad day and really needed to hear this!!!!!!!!"
Feb 8
Jean replied to akb's discussion Some questions in the group Frontal Fibrosing Alopecia
"Although I've been an avid reader of the discussions, I haven't contributed for a couple of years.  I just wanted to report that after about 10 years, my FFA has finally burnt itself out - or at least I'm in remission!  The…"
Feb 8
Plf replied to akb's discussion Some questions in the group Frontal Fibrosing Alopecia
"Hi jmh, thanks for your brave story, I am waiting on a consultation with a pharmacist re commencing drug treatment for FFA.  Like you the specialist has prescribed spirolactone and Minoxidil and dutasteride.  I am at the cross roads as to…"
Feb 7
MnM and akb are now friends
Feb 7
akb replied to Dragon&Fox's discussion Low Dose Naltrexone in the group Frontal Fibrosing Alopecia
"I'm just about to start LDN, prescribed by my integrative medicine doctor . . . I have avoided all the other drugs other than topical steroids and am hoping that this might work in conjunction with my AIP diet to help a little! I'll report…"
Feb 7
ammie replied to akb's discussion Plaquenil? in the group Frontal Fibrosing Alopecia
"I take Plaquenil 200 mg twice a day and haven't experienced side effects. I've been taking it for about two years now. It has cleared up the flakiness on my scalp and I have less shed since I've used it. I see a retina…"
Jan 22
Airam-FFA replied to akb's discussion Plaquenil? in the group Frontal Fibrosing Alopecia
"Hi akb  Thank you for sharing the info about the 3D system, it does seem similar to the Lucinda Ellery system, and the info about being suitable for sensitive scalps is useful to know.  At the moment I am ‘coping’ with this…"
Jan 21
Afraid replied to akb's discussion Plaquenil? in the group Frontal Fibrosing Alopecia
"Hi Lara best of luck with your new treatment regime.  I have read finasteride has the highest percentage chance of success.  I know exactly what you mean about thought of shaving versus waiting and watching soul destroying progression.…"
Jan 21

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At 12:36am on March 8, 2017, Cheryl, Co-founder said…

Hi Alexis,  

I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us and we look forward to your input. Be sure to check out "10 tips for getting the most out of Alopecia World” which include a few tips to get you started!

Cheryl, co-founder

 
 
 

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