Comment

Comment by Jodie UK on October 23, 2014 at 6:02am

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 Classical Anne in NC mountains on October 22, 2014 at 11:10pm

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 October 22, 2014 at 10:59pm

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 October 22, 2014 at 10:06am

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 Jodie UK on October 22, 2014 at 9:23am

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 October 22, 2014 at 9:23am

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 October 22, 2014 at 9:14am

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 Jodie UK on October 22, 2014 at 8:25am

Claire, I have taken Mycophenylate mefetl, I didn't have any side effects to this drug but didn't find it made any difference to my FFA, the only drug I have taken that I felt actually stopped it was cyclosporine which is a very powerful drug, but the side effects were horrendous, so I had to stop after a few months and the FFA became active again as soon as I stopped taking it.
We all react differently, so maybe so this drug may work for you.
I attend Dr Susan Holmes at Glasgow Royal Infirmary, she works very closely with Dr Christos, and I have now been prescribed a drug called toctino, it is not licensed for FFA, so I guess this is an experiment, I have only been taking it for 7 days, no side effects as yet, but early days.
I would be interested to know if anyone else has taken this drug or has been offered it.

Comment by Anne Louise on October 19, 2014 at 8:05am

Hi Murphy welcome to our group and I am sorry to hear of your diagnosis. I just turned 47 yesterday and was diagnosed earlier this year. You will find tons of information and support here. You may want to consider getting your eyebrows tattooed. I have a post about it in the discussion forum above.

Comment by Murphy on October 18, 2014 at 8:25pm

Hi everyone. I'm new to the group. I'm 47 and was diagnosed with FFA a few weeks ago. Similar story, lost my eyebrows, receding thinning hair, loss of hair on upper arms and legs. I saw four doctors before being diagnosed and was relieved to finally have an answer. After a year of intense itching and burning of my scalp and body, I felt like I was going crazy!! So, I'm just starting to read through the posts. I used clobetisol, but got painful bumps on my scalp. I started a serious detox today (master cleanse) I did this several years ago and had relief of joint pain. I'm deeply concerned about my appearance and have difficulty styling my hair. I was wearing bangs to hide the fact that my eyebrows are gone but now the bangs are sparce! It will take me some time to read the posts but so relieved to have found this group!!

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