Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 178
Latest Activity: yesterday

Discussion Forum

FFA and asthma

Started by Kathy. Last reply by Root Beer on Wednesday. 8 Replies

Hi everyone!Just wondering if any of you suffer from asthma.  I've had allergies since moving to California 30 years ago - but usually in the winter and related to what the eucalyptus trees do that time of year.  But after being diagnosed with FFA…Continue

What do we have in common?

Started by cubbieblue. Last reply by Root Beer on Wednesday. 12 Replies

Hello Everyone. I've read most of your posts and in many of them I see similarities in our symptoms, activities and lifestyles, so I thought I would share some information about myself and my life with this illness. Maybe we will discover some…Continue

Are you contemplating eyebrow tattoos?

Started by Anne Louise. Last reply by Carol Sue Cain Oct 18. 59 Replies

I am here to say I strongly recommend getting it done! It is worth every penny. I had mine done yesterday and I can't believe the difference in my life. For a year I had been carting around eyebrow pencils, always worrying about smudging throughout…Continue

FFA my new prescriptions

Started by Michjo57. Last reply by Kpengell Oct 13. 35 Replies

I went to the University of Colorado this week to see a doctor who specializes in alopecia and pigmentation disorders. I had been diagnosed by biospy with lichen planiplaris this summer. The new doctor took one look at my head and said I had FFA…Continue

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Comment by Jodie UK yesterday
Pam, the drug I have been prescribed is called Toctino in the UK, it is mostly used for chronic hand eczema, I don't know if any other FFA sufferers have ever used it, or if I am a guinea pig for this experiement. It's early days so I don't know if or how effective it will be, but will keep the group informed.
I am so sorry about your problem, but I also agree it sounds more like an allergic reaction to something.
PS- Just back from wonderful holiday in San Diego, you live in an amazing city, I Love it
Comment by Rebecca Germany yesterday
Pam, cyclosporine isn't the same as cell cept. Cellcept is another immunosupressive drug. The brand name of my drug is "immunosporine" but it may be different in the US.
Cyclosporine is for severe cases for whom plaquenil and doxycycline don't work.
First I was against taking such a strong drug because I thought my immunesystem wouldn' t work anymore, but the professor assured me cyclosporine would only calm down my immune system a bit as it is overreacting with the ffa.
Comment by Classical Anne in NC mountains on Thursday

Pam, please go see your doctor [not necessarily your derm] !  That kind of itching, including palms of hands sounds like a bad allergic reaction.  I've been there too often, and it's not a happy place.  Something you are taking/doing is not right for your system.  I hope you find relief soon.  Don't try to ignore the symptoms -- you may end up needing adrenaline injections to help flush it out of your system.  Best wishes!!

Comment by PamW San Diego, CA, USA on Thursday
Rebecca and Jodie, is cellcept the same as cyclosporine? Also can you tell us more about the new drug you are being prescribed? My doctor in San Diego did her residency at Dr. Christos hospital. I am having a terrible few weeks with itching and burning. Not just my scalp. My ears, neck, palms of hands just itch all the time. I am desperate for relief.
Comment by Jodie UK on Wednesday
Rebecca- I'm glad you have no adverse reaction to cyclosporine, because I can honestly say it was the only thing I have taken that I felt had any positive effect on FFA, but I am also unable to take plaquenil, because I have a bad reaction to this drug also, so my body must have a low tolerance. I've had FFA for more than
8years now, and I go between swearing I will never try anymore drugs to treat it, to being so totally depressed and desperate that I end up taking whatever else my doctor recommends I try next.
Comment by Rebecca Germany on Wednesday
Jodie, no I didn' t get a fact sheet. But my blood levels are tested every month and they are ok so far. The only side effect I have is a burning sensation in my hands.
Comment by Jodie UK on Wednesday
Rebecca- it was mostly my kidneys that were affected but was also starting to affect my liver to a lesser degree, I also grew fine dark hair all over my face, but I was strictly monitored, blood and urine tests every week, then the dosage was lowered and I attended for these tests every 2 weeks, but my derm and I came to the decision, I was not a good candidate for this drug and it was stopped, after a couple of months. Everything was back to normal within a few weeks after stopping taking it, but as I said we all react differently to different drugs, what works for one person may not work for another, I don't mean to scare anyone, and I'm sure your doctor will monitor you very closely.
Rebecca did you get a fact sheet before you started cyclosporine detailing all the side effects? I had to read up on it and answer questions from the fact sheet before my doctor would prescribed it to me.
Comment by Jules UK on Wednesday

Hey ladies - I've just had a look at the survey responses so far and FFA has a pretty good representation.  Well done!  Let's get some more and get ourselves noticed! xx

Comment by Jules UK on Wednesday

UK ladies - just a reminder about the online survey to help with directing research.  Several of you have let me know that you've completed it already.  Thank you so much!  If you haven't yet, please do take a look.  It's worth having a bit of a think about what questions you'd like research to answer before you do, to save time.  Many topics have cropped up on this forum - there should be no shortage of ideas!  Then, it should only take about 10 mins, depending on how much you have to say, of course.

http://www.alopeciaonline.org.uk/hairloss_PSP.asp

Please do grab this chance to have a say!

xx

Comment by Rebecca Germany on Wednesday
Jodie, what side effects did you have with cyclosporine?
 

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