Agneta
  • Female
  • Sollentuna
  • Sweden
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Latest Activity

Agneta replied to jmh485's discussion Hairline lowering / forehead reduction in the group Frontal Fibrosing Alopecia
"Hi jmh485,  I am very interested to hear what kind of drugs that was used in your cocktail. How long did you take it before your FFA got stable. I have been on Plaquenil and antibiotics for a year and Finasterid for 6 month, Still not any…"
Sep 5
Agneta commented on Celia UK's group Frontal Fibrosing Alopecia
"Hi ladies Comments from me in Sweden. Since August last year I am om Plaquenil, Finasteride, Antibiotics and Seratonin. No sideeffects at all and no weight gain but still very red on the scalp and progression very slow. Take Care Agneta"
Aug 25
Airam-FFA replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
":)"
Jul 14
Linda from MT replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"We have wind every single day in North Central Montana plus I have problems with my sinus's so a headband is a necessity of life. I hope that you enjoy wearing them as much as I do!  Linda"
Jul 14
Airam-FFA replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"Hi Linda Thank you for posting the link. They have a huge range of headgear plus also a UK website which saves on import duties. I like the idea of the headbands - I often work in a hot kitchen so wearing one of these would maybe stop my…"
Jul 13
Linda from MT replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"https://www.buffwear.com I tried to copy & paste their website. Linda"
Jul 13
WJ replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"I forgot to mention that I am also taking anti-inflammatory herbs. WJ"
Jul 12
Airam-FFA replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"What does a Buff Half Headband look like? xOx"
Jul 12
Susiewoo replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"Hi, I saw my derm 2 weeks ago and I asked this question he said in some cases about 3 yrs but of course everyone is different, I'm currently taking Hydroxychloroquine 2 x daily and my derm said that this appears to have slowed the progression…"
Jul 12
Minter replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"That is great you are getting out and hiking, this stupid disease can take over your life if you let it. "
Jul 12
Linda from MT replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"I have been on Humira since December 1, 2016, self-injections every other week after taking Plaquinal  over four years.  I continue to have lab work done on a regular basis, every three months.  I can't see any improvement but…"
Jul 11
WJ replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"FFA is said to start on the sides near the ears. "
Jul 11
WJ replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"HI, Aneta. I was recently diagnosed with FFA.  My dermatologist has been giving me steroid shots and topical liquid for several months but only recently did a biopsy which diagnosed me with FFA.  At that time I changed dermatologists…"
Jul 11
Sad in chicago replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"i don't think it is that rare as my hairdresser/wig specialist has a booming clientele. She deals with FFA, all Alopecia's and chemo hair issues. She has several FFA clients. Glad the haircuts are good. Hang in there."
Jul 8
Minter replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"Yay!!!! I am so happy for you! It is amazing how a great haircut can make all the difference in the way you feel- I also went 2-3 inches shorter a couple of weeks ago, it is still a bob and I have to pin it over my ears when I "go out in the…"
Jul 8
illustr8r replied to Agneta's discussion Biological medicin towards FFA? in the group Frontal Fibrosing Alopecia
"Hi Minter! Haircut was a success! I'm very happy! My dear stylist is on this rollercoaster with me bless her heart. I told her I didn't want to see or feel my hair. When the wind blows I want to be able to shake my head and have the hair…"
Jul 8

Profile Information

Relationship Status:
Married
About Me:
Hi
My name is Agneta Ryden and I live in Sweden. born 1947. Nine month ago I was diagnosed with Frontal Fibrosing Alopecia (a variant of Scarring Alopecia).I was devastated and got deeply depressed. However, as the progression is very slow I gradually felt calmer. I´m on medication for a long period (tetracyclin and Plaquenil). The medicaation will not cure the desease but hopefully halt the progression.

I would like to come in contact with other members who are suffering from FFA.

As FFA is very rare, it is difficult to find people who suffer from this disease in Sweden, as population is to small.
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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At 7:22pm on December 30, 2016, Larry Barbee said…

Welcome to the group, Agneta. I hope you'll find some people with FFA, and anything else you may need.

God bless,

Larry

 
 
 

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