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Does anyone know anything about the drug 'Ciclosporin' .....
I'm new here and have just been recently diagnosed with Fibrosing-Scarring alopecia. It's the slow type...meaning- i'm slowly loosing all my hair. Though i've lost quite abit now. It's been two years since i first noticed it. I seen three different dermatologist over those two years. I kept asking to go back as i knew something wasnt right....You just know dont you. but they said it was just stress...then it was my age etc ect...Eventually through my insistence i was sent for a biopsy one month ago and the above was the results.............
Anyway since it's been confirmed, Ive been devasted.....
It's my first thought even before i open my eyes, it remains with me throughout the day and it's my last thought before i eventually struggle to sleep...if i'm able to sleep that is....
My dermatologist said they cant bring back the hair which is lost....Which i kinda knew already.....
But, they think the rest may be able to be saved . But as always there are no guartees. So if i want to gamble, he's suggested i take 'Ciclosporin'.
It's what they give to patients who recieve organ transplants to stop thier body rejecting it. It works by suppressing the immune system. This drug, from what i've read, has very serious side effects. But they say i will be monited.
I'm in such turmoil trying to decide the best action to take. The longer i take trying to decide the more hair i'm loosing thats guaranteed not to come back. The dermatologist is not a very helpful one..infact he's rather abrupt. I've just over a week left to make up my mind before seeing him again.
Does anyone know of this drug, has anyone been on it....are there any success stories?.....
Please let me know saap....
Thanking you all Jo x
Anyway since it's been confirmed, Ive been devasted.....
It's my first thought even before i open my eyes, it remains with me throughout the day and it's my last thought before i eventually struggle to sleep...if i'm able to sleep that is....
My dermatologist said they cant bring back the hair which is lost....Which i kinda knew already.....
But, they think the rest may be able to be saved . But as always there are no guartees. So if i want to gamble, he's suggested i take 'Ciclosporin'.
It's what they give to patients who recieve organ transplants to stop thier body rejecting it. It works by suppressing the immune system. This drug, from what i've read, has very serious side effects. But they say i will be monited.
I'm in such turmoil trying to decide the best action to take. The longer i take trying to decide the more hair i'm loosing thats guaranteed not to come back. The dermatologist is not a very helpful one..infact he's rather abrupt. I've just over a week left to make up my mind before seeing him again.
Does anyone know of this drug, has anyone been on it....are there any success stories?.....
Please let me know saap....
Thanking you all Jo x
Replies to This Discussion
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Permalink Reply by Lynn on
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Hi Jo,
I have cicatricial alopecia also. Mine is a slightly different type than yours although I wouldn't be surprised if I had a combo of the frontal fibrosing and what I was diagnosed with; lichen planopilaris. I still have a good amt of hair as it looks that you do as well, the upsetting part is that they can't tell us when this will stop. What I hear is that it stops when it wants to, when it "burns out". So sad. But I am in such a better place than when I first found this out in the beginning of the summer. So enough about me...no, I'm sorry, I had not heard of the drug you mention. I've been on antibiotics and am on some topical steroids. The next drug they would try on me is an antimalarial, the name of which escapes me at the moment, but I'll write again if I remember it. It has some potential bad side effects too so I'll be in the same boat as you are if I have to make that decision. Macular degeneration - bad eye problems. I've actually gotten to the point where I've started to brace myself for the worst in terms of loss and have started learning more about wigs. I am only 30 but I have a feeling that at some point in my life I will need a hairpiece. But until then I am taking very good care of what I have and doing what the dr.s tell me. :( It is sad. I've always loved my hair...people always told me I had enough in one pigtail for 2 ppl. Keep in touch...from what I'm learning there are not many of us with cicatricial. I don't want to believe that though. It seems crazy to me that I came down with this, its just so out there. But if you read the stories from ppl on this site, ppl with all diff. types of alopecia, a lot of ppl were blown away by this...never expecting something like this. Good luck to you and keep in touch. -
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Permalink Reply by BaldGirlsDoLunch.org on
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HI Jo Kelly,
I'm sorry to hear you're going through this difficult time. I would also try to see a different dermatologist in that ptactice next time if you could, You want good communication with this person on your health team.
What I would do if it was me and not knowing if I would take Cyclosporin or not is to discuss it with my internist. I would want my primary care physician to be front and center in my care if I was thinking about and/or taking a systemic anti-inflammatory medication.
The dermatologist is not the single person to monitor you for complications, side effects nor the one who understands your complete medical history as well as your internist will. You want the person who sees many patients on Cyclosporin and is not just a skin specialist.
I see you're in the UK with national health service. If you decided to start on it with the dermatologist you would want to make the appointment with the internist as soon as NHA would permit if you couldn't get to see the internist before you start the regimen.
Wishing you the best with this.
Thea
baldgirlsdolunch.org -
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