New person needs help, advice, support!

I was recently diagnosed with FFA . The Dermatologist gave me a topical for my scalp, prescribed 200mg of Hydroxychloroquine , set up a follow-up appointment for six weeks , and told me to find a support group.

And then 1 week later , corona virus happened !

so all my appointments were canceled and also a Second opinion appointment I was able to set up, was also canceled.

So I am at home now for eight weeks unable to go out and investigate hairpieces , wigs, meds, etc.

Recently, I read on someone’s site about the CBD tincture ?. It is legal here in Michigan so I could try to get?

I also immediately got on an anti-inflammatory elimination diet with my acupuncturist . I am taking some natural supplements for this auto-immune disease. All gluten, sugar, and dairy are gone, among Many other foods.

I did have various blood tests done, but nothing stood out .

i am in my late 60’s and feel so alone and helpless with this, I don’t know of anyone or know of anyone that knows anyone that’s been through this . And being in the state of our world, it’s a struggle to stay positive, especially since the weather is as crappy as it can be.

One person mentioned they got this condition after receiving Botox ?( which I have done at least twice a year 4-5 years now.? )

I Also read somewhere that a reputable Doctor Found a correlation with using moisturizer and make up with sunscreen by your scalp. He is seeing a huge increase with women getting alopecia . (AND I have been using sunscreen moisturizer’s religiously to prevent skin cancer!).

Has anyone else been using Hydroxychlorquine (200 mg) for this condition .?

I just worry about some of the side effects of this medication. I am a natural health person and don’t like taking meds, especially if it can effect your eyesight .

And one of the sites said hair loss was a side effect! I just don’t know . It may be in my mind but I feel like it’s hurting my joints and muscles. And I also have Osteoporosis and Osteoarthritis.

I am an avid exerciser and I don’t want to give in to this.

I’m going full force with meditation trying to deal with this added stress. Although it says stress really can’t cause this I have been through a lot of stress before this happened ?

I just don’t know where to turn next ?.

can anyone give me some thoughts.?

Views: 149

Comment by Bon on May 1, 2020 at 10:46pm

Hi Susan, my hair started falling out in 2017 4 months after a near fatal routine surgery. I've lost way more hair since this pic. I finally got a biopsy and am diagnosed with Lichen Planoparlis a rare form of scarring alopecia. So the doc who did the biopsies gave me a steroid topical liquid to calm down the inflammation.  I was already on no sugar, gluten, organic free free free diet...I've never been a sugar kind of gal....until this last 3 months!!! Have a brilliant Naturopath who is proactive in doing research. I refused the oral medication my biopsy doc suggested and have used the topical steroid about 6 times just in spots. I am alternating with tea tree oil and diluted APV/H20 it works. Also had my boyfriend cut my hair a bit shorter but can still wear it up.

I found out I have candida most likely left over from massive infusions in ICU of antibiotics. I was in so much pain surgeon left me with I was on Vicodin for way too long.  Anyway, doing research I found a link between candida and alopecia!!! Also, my ND found out that yeast Loves Biotin!!! So I am currently taking a natural supplement to get yeast under control and cortisol managers by Integrative to help me calm down and sleep better.  Osteoporosis and Osteoarthrits are both inflammatory conditions. Our gut is our 2nd brain, most all diseases begin in the gut so establishing the right PH and normal gut biome is very important. You are doing a lot of what has gotten me through the initial trauma of this: natural remedies, meditation/prayer, acceptance and gratitude for all my blessings and developing a curiosity about this condition. I firmly believe God gave us bodies capable of healing theirselves if we take good care. I'd rather lose all my hair than ruin what is a very healthy body with the usual recomended meds that have terrible side effects.  I AM NOT MY HAIR, I AM NOT MY BODY THOUGH BOTH ARE MINE to care for. I had beautiful thick natural curly hair but NEVER appreciated it....treated it an my enemy...no wonder the Universe decided to release me from it. I have beautiful wigs, been wearing them for a change out for years! BE GENTLE WITH YOURSELF, you are not alone. Keep doing the healthy things, count your blessings even during this pandemic, and message me anytime. My ND is trying two approaches which 5 dermatologists are very interested in, guess I am a case study....LOL. If you want to know more about what she's doing friend me on Facebook or here. I hope I haven't bored you. So those are my thoughts for now. I have much to share as I am a retired Research Analyst. Stay safe.  Sending Healing and Loving Life Particles to you Susan.  Bon

Comment by Susan on May 5, 2020 at 10:50pm

Hi Bon,

Thank you for sharing a little of your history and a lot of helpful and supportive info.

you Definitely have Not bored me! So far you have been the only one that has responded, 

 I guess I don’t know yet how to maneuver around this site .    and as I mentioned in my blog, I am one of the rare individuals Not on Facebook! 

I would Love to hear what two approaches you are trying., And anything else that can start me in the right direction. 

 I actually am seeing the dermatologist tomorrow after initially being diagnosed eight weeks ago .

i will try again to friend you,  thanks for caring and sharing, 

Susan 

Comment by WheresMyHair on September 2, 2020 at 10:52pm

Susan you are 100% correct link between Candida and Alopecia. I been in healthcare for over 25 years and many healthcare professionals will tell you different....please share your Candida control protocol and my family and I will be starting 1 ASAp.

Comment by WheresMyHair on September 2, 2020 at 10:54pm

Actually realized Bon is 100% Correct Candida & alopecia

Comment by Catgirl on November 12, 2020 at 2:36pm

Hi Susan and Bon! I have been hiding in my house having just lost what was left of my hair about a month ago. I'm devastated with this but am not giving up! I've had the injections for the past 3 years which seemed to be working until I stopped them, then the lotion which doesn't really do too much. My GP recently changed some meds and then it all just fell out within a week.  Now I've got myself a good Naturopath and she has taken me off all sugar (I've been a sugar-holic most of my life) I'm really interested in the Candida-Alopecia connection!  I'm also wondering if Oral Contraception could also be a culprit? I was on those for over 20 years in my youth.  I'm in my mid 60's now and feeling like what I still had for looks vanished almost overnight and that has nearly destroyed my self confidence.  All the very best to you both! 

Comment by Sher yesterday

Thank you all for sharing. I am 63 and diagnosed with FFA on 11/5. I was supposed see my derm for a small loss at my right temple but it was postponed due to the start of Covid. The rescheduled date was them cancelled in April so finally had my appointment Nov. 5. By that appointment, I had some loss around my left temple area and some loss and scarring across my forehead. I was prescribed a steroid 2x/day around the hairline. I’m also losing eyebrows. I was prescribed an ointment, 2x/day. I’m now seeing my lashes thinning. I’m beside myself. I had decided ok, wig if it comes to that and tattoo my eyebrows if I need to but my eyelashes??! I’ve been crying today because it is so upsetting. I requested the oral medication because my dr said that has shown results. I’ve been reading a lot about this and also saw same - oral seems more effective than topical. Does anyone have experience using the oral? Since I was diagnosed with FFA I was also diagnosed with Celiac Disease. I have chronic inflammation, myofacial and joint pain, periodic skin flushing neck/face, lichen sclerosus and fatigue. I will be working with a dietician to transition my diet. I just am in a fog. My family doc said perhaps FFA is tied to Celiac. Does anyone have these same issues? Being post-menopausal I’ve asked about hormones. I don’t take them. Anyone been told hormonal issues caused their FFA? Thank you.

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