Replies to This Discussion

Permalink Reply by Halfbakedwho on August 8, 2018 at 4:10am

yeah, my impression is that they sort of throw things on my head to make themselves (and me) seem like we are doing *something* but honestly they don't know what the hell to do. 

I no longer am on Clobestasol, but just the Bethamethasone. Which seems to calm the inflammation a bit. Does it stop the hair loss? I dunno. 

I tried to stay on a no-gluten anti-inflammation diet myself for a while but 1. I don't think it makes a difference 2. I have a hard time tolerating even minimal orthorexia. 3. I think I take decent care of myself, my nutritional needs, and my body without extremes. 

I really don't want to take anything internal in terms of medicine - that's where I draw the line. The side effects aren't worth it for any potential and minimal benefits. 

Permalink Reply by 2Dachshunds on August 8, 2018 at 11:35am

that seems to be a recurring theme, no one really knows, maybe something helps, maybe not, is it worth it to withstand side effects???

I too take pretty good care of myself though I admit I have been eating a lot of sugar and not exercising.  But I did ride my bike the last 2 days so will  keep that up.

Permalink Reply by 2Dachshunds on August 8, 2018 at 11:35am

Do you think the Plaquenil is working?

My derm said she wanted to see if anything else worked before starting that or any other "strong" medicine.

Permalink Reply by Carla on August 8, 2018 at 8:05pm

Hi Maria,

I also was prescribed a tacrolimus ointment called Protopic. It definitely was greasy & I applied it only at bedtime. It made my eyelids swell overnight & did not help at all with the hairloss on my scalp or eyebrows. Currently I am only taking Vit. C, D, Biotin & concentrating on my diet...protein, greens, veggies, fruit. The hair on my scalp appears to be coming in but at the same time I still am losing small amounts daily...some of which are of the new growth. Eyebrows show regrowth but also loss at the same time...go figure. Good luck to you as well as to everyone on this site.

Carla

Permalink Reply by 2Dachshunds on August 9, 2018 at 11:00am

Hi Carla:  I just started what was supposed to be prescribed and that is tacrolimus 0.3% in Cetaphil cleanser.  That is what was used in a research study Shapiro et al did, "Prognosis, treatment, and disease outcomes in frontal fibrosing alopecia: A retrospective review of 92 cases" so I am trying it for 4 months to see if it will work.  This has to be prepared by a compounding pharmacist and is expensive, I got it for $100 for 1 month supply : (  and they shipped it slowly so I have limited time for use before it expires!  So I have to ask for overnight shipping next time.

Last night was first time putting it on, yes it is Cleanser not cream and yes I have to leave it on after application.  It actually soaked in well and was not greasy like the ointment.  I was able to apply this morning and had enough time for it to dry and my hair looks ok, not oily.

I was drowsy this am, that is a side effect and I feel the application site is a little itchy, I think that is supposed to go away after a couple of days.  We shall see.

I had started the CBD oil and salve and used it until I got the correct prescription.  I will dc the salve but the other is sublingual drops so I will keep taking that at night.

According to this article, some patients saw stabilization within 3 months, others 18 months. So I guess I will assess monthly and hopefully if no side effects I can keep taking this.

Thanks for the info on vitamins you are taking and diet, so important.  My primary care dr. just ordered blood work based on info I got on this site so I'll update when I get results to see if anything there is out of whack.

Best,

Maria

Permalink Reply by Kathy in Denver on August 30, 2018 at 9:50pm

I was diagnosed 2 years ago. I go to Dr Newman at UC Health in Denver. My condition has been inactive for over a year and a half. She has me taking Hydroxychloroquine and finastreide with no side affects. I also live a pretty clean protocol—-diet and stress wise. I have a lot of new hair growth around the scars which really helps. Dr Newman has a great, kind mannerism and worked with me very thoughtfully to understand the condition and treatment options. It is not easy to get into her but worth it. There are other doctors in the group that use her same protocol as I understand it. Good luck. 

Permalink Reply by 2Dachshunds on August 31, 2018 at 10:53am

Hi Kathy:  my dr. didnt want to put me on finesteride because I am still perimenopausal, she didnt explain exactly, and I wasnt sure what to ask, but I assume it is because if there is a potential for pregnancy, they wont do it.  I do not want to get pregnant nor expect to but I guess that doesnt matter.  I saw a recent research publication by a Canadian dr who had excellent results using finestaride, although it was for only 1 woman.  She had hair regrowth.

I'm so happy for you that you are having new hair growth!!!  That is fantastic!

Permalink Reply by Leigh on November 11, 2019 at 3:21pm

Hi Maria - I haven't been on this site in quite a while, but wanted to reply as we're all in the same boat, and the women here are so supportive. I'm so sorry you have this as well. My diagnosis was in April of 2017 when I was 59, when I noticed bald spots near my ears, thinning areas, and tiny, itchy red spots all through my hairline. My eyebrows were pretty much gone.

The first derm told me in less then 10 seconds I had FFA, classic case, and he's seen many. I was horrified and cried for weeks, but took the topical steroid home and did some research. Fast forward, consulted with three other Dr.'s back then, all of whom specialize in hair loss, and while I've refused any oral meds because of the cancer risk in my family, I've settled into seeing one practitioner who's been doing the steroid shots in my hairline every 5-6 weeks for the past few years. It's the treatment I feel safer with. Yes, it did give me a few dents and some mild atrophy. The better news is some of the atrophy has filled back in, as my Dr. is very judicious and lays off those areas during the next session. I've repeatedly told her, "don't worry about it. If I eventually have to wear a wig, I'll be covering my hairline anyway." Overall, as one of my favorite Dr.'s had said, "some of my clients consider the atrophy a trade off."

For me, the shots and the topical steroid (2x a week) did seem to lessen the inflammation and slow the hair loss, and I was thrilled to see re-growth around my ears about 6-8 months after I started. Guess the disease hadn't killed all the follicles there. I threw out all my chemical sunscreens (now use zinc) and any makeup with an SPF went into the trash. I keep face cream away from my hairline, wash my hair in cooler water and use the cool setting on my blow dryer. The first year I noticed the sun really aggravated my scalp and caused more shedding, which one hair loss derm had mentioned, so now I wear a hat or bandana at the beach or when hiking or working outside. I detest wearing anything on my head but it's a must.

I was hoping beyond hope things had stabilized for a while, but this past spring after much research and deliberation, I had dermal fillers in my cheeks and tear troughs. (My co-workers are getting younger and younger. :-(  The bags under my eyes were awful but I was afraid to do surgery. I'd consulted a rheumatologist about the fillers as I'm hypothyroid and wondering if the fillers might cause other autoimmune issues or worsen my FFA. She said some of her clients have had them, she thought they might be ok.  Not my luck.  About a month after that procedure, (the newer filler products use cross linking technology which can cause an immune reaction) I felt like I had the flu, my face swelled up and I had a big hair shed for another month. My hairline is now worse than it was a few years ago. So, I'm back to using "root blur" powder in the bald spots again.  And still hoping my immune system will back off now that the fillers are almost gone, less than a year and I'm balder.

I truly hope whatever treatment you pursue works for you. Stress does make things worse, so exercise helps, at least for me.  This is such a great site, and I'm grateful to all the people who take the time to write. They certainly helped my sanity when I first found them. :-)  Best wishes!

Permalink Reply by Toby on November 15, 2019 at 9:24am

Leigh, Thank you so much for sharing your story!  I read your first 2 paragraphs and thought you sound exactly like me, I was diagnosed around the same time and have been receiving the same treatment of topical steroid and I am also taking finasteride.  I have also given up sunscreen ( or use only zinc oxide) and use EWG recommended moisturizing shampoos and conditioners.  I have also cut out SPF containing products and really cut back on using make up as I work from home.

it is really interesting that the dermal fillers caused hair loss to increase.  Your dermatologist will know what chemicals are in the dermal fillers.  The doctors at Mass General Hospital are studying the chemicals that cause FFA. They recommend avoiding methylchloroisithiazolone which is a preservative in liquid makeup, hair products and cleaning products and sunscreen. They also recommend avoiding oxybenzone, Lina look, limonene, fragrance, avobenzone, octicysalate, ammonium persulfate, and paraphenylenediamine. It would be interesting to know if the dermal fillers contained any of these chemicals.  I guess we all need to be informed and very selective about what chemicals we use on our bodies. Thank you again for bring this to light and I will ask what chemical ingredients are in substances used for procedures on my body in the future.  Best of luck to you and all.

Permalink Reply by MEvans on January 2, 2020 at 7:39pm

I'm grateful I found this site.  I was diagnosed last year after noticing my sides receding. I have very sensitive skin, especially to sunscreen (paba specifically).  I was prescribed the Dermovate which burned too much. I then started Legal or injections for 8 months  going every 6 to 8 weeks.I had to travel 2hrs to the dermatologist.  I also used a shampoo they prescribed and a hair growth supplement.  Since I stopped the injections and supplements I have experienced more loss and increased itchiness.  Not just around my hairline but around the front and inner area of my ears .  I was thinking about starting the auto immune protocol and avoiding chemicals but was unsure which ones, so I am happy to read the recommendations above.  I am 59 hrs old.  I take hrt and am thinking about discontinuing that.  I decided also that being part of a support group can only be a good thing.  I live on Ontario, Canada. Thanks for being here.

Permalink Reply by ohnonotme on January 4, 2020 at 5:55pm

Can you be more specific about what you have read about FFA medications and cancer risk? I am curious about this because I had breast cancer in 2018 and was diagnosed wiith FFA in 2019 so I want to do things to help the FFA without increasing the risk of more cancer. Thanks! 

Permalink Reply by Leigh on January 5, 2020 at 1:12pm

Hello ohnonotme - I'm so sorry to hear about your breast cancer diagnosis, I hope you've recovered and are doing well.  It's truly unfair you now have to deal with FFA as well.  To answer your question about oral meds for FFA, a few commonly prescribed for the condition are Hydroxychloroquine, (brand name Plaquenil) Finasteride (brand name Propecia) and oral prednisone.  Because my mother developed breast cancer decades ago, and I've lost several other family members to the disease, I'm extremely wary of any medications that either raise estradiol levels (over 70% of breast tumors are estrogen dependent) or have immunosuppressive effects.  Per my research, the meds mentioned above have been proven successful in many cases for hair loss, but there are side effects which concern me.  Finasteride reduces inflammation, but per the manufacturer's own brochure, “mean circulating levels of testosterone and estradiol increased by approximately 15%“.  With respect to immunosupression, although I'd like clobber my own (immune) system for killing off my hair follicles, it may be taking out any circulating cancer cells as well, so I'm inclined to let it do its job unimpeded.  Again, I'm very conservative.  I hope whatever treatment you choose with your Dr. works well for you.  All my best wishes!!       

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