Comment

Comment by Jodie UK on November 13, 2014 at 6:49am

Donelle-I had to attend the derm clinic every 2 weeks while on cyclosporine for blood, urine and blood pressure checks. I didn't feel poorly, but I felt like I had a chill and if I needed to wee I had to go instantly and had that kind of sensation you have with a chill. Be guided by your derm and discuss any concerns with them

Comment by MJ on November 13, 2014 at 5:49am

I wonder if toctino is similar to elidel, which is also indicated for excema. I was started on this in September.

Comment by Donelle on November 13, 2014 at 4:45am

Jodie I am wondering whether its worth trying it.  Did lab tests show the adverse effect on kidneys/liver?  Did you feel poorly whilst taking it?

Comment by Jodie UK on November 13, 2014 at 4:41am

Donelle
It was about 2yrs ago I was prescribed cyclosporine, I was only taking it for few months and it was decided I was not a good candidate for this drug, as it was starting to affect my kidneys/liver,it's a very powerful drug and I don't think it can be taken long term, but I'm not sure about this.

Comment by Donelle on November 13, 2014 at 4:21am

Jodie I read some of your earlier posts and I'm curious why your derm has changed your meds from cyclosporin which seemed to be working for you.  Is there a limit on how long you can be on it?  

Comment by Jules UK on November 13, 2014 at 4:17am

Just googled Toctino. It's interesting that it's a treatment for eczema, like Protopic. I'll ask Dr Kaur about it at my next appt.
There was a phone conference last night about the Hairloss survey. We're really pleased with the numbers responding and especially FFA. Well done. The survey is staying open until Sunday because of the CARF conference - there'll be opportunity to complete it there.
I can't go but look forward to reading about what's discussed.
X

Comment by Jodie UK on November 13, 2014 at 4:09am

Hi C
I attend Dr Susan Holmes at Glasgow Royal Infirmary, I know she works very closely with Dr Christos as he spoke very highly of her on the telephone, at the time when I was taking part in his study.
I have had FFA for a long time now, and it's so unpredictable I don't know if I'm going through a quiet spell, or if it's Toctino that's making a difference, that's why I would be really interested to know whats Dr Christos opinion this drug. I have not heard of anyone else prescribed Toctino for FFA.

Comment by Celia on November 13, 2014 at 2:50am

Jodie - I wonder which derm you are seeing ? Glad your symptoms have subsided.

Comment by Jodie UK on November 12, 2014 at 8:42pm

Hi all
I have been taking a drug called Toctino for the past 3-4 weeks, so far so good as I don't have any side effects, and no symptoms of FFA since I started taking it, I am not sure if the hairloss has slowed down as its still to soon to know. I would appreciate if anyone going to the carf meeting would ask the dermatologists about Toctino as it is not prescribed in the USA and this concerns me very much.

Comment by MJ on November 12, 2014 at 8:29pm

When I was at my last appointment at the Cleveland Clinic, I asked Dr. Bergfeld if she has seen others who have reached the elusive "burnout." She said yes. I guess if they have, they have moved on and we won't hear from them in this forum. Hopefully one of us will be able to say we have reached that point! It just seems odd that so many have had FFA for years and it has not run its course.

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