Cyclosporine and Olux-E foam combo seems to be working for me.

Hi Everyone,  I started on cyclosporine (200mg/day) and Olux-E foam (0.05%) 9 weeks ago and I'm starting to see little black tufts of hair all over my scalp. Trying not to get too excited but this is the first new hair growth I've had in about 5 years.  My derm said if it was going to work it would take 4 - 6 months.  I wonder how many of you out there have tried this combo with any success?

Cheri

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Permalink Reply by Cheri A on March 24, 2016 at 12:02pm

Hi Vicki.  I'm really sad to report that my hair completely grew back in while on cyclosporine but 1 year later, it all fell out again. I tried increasing the dose but that didn't make a difference. Since going off the drug, about a year now, I have progressed to complete AU. I have accepted it for the most part and now concentrate more on being happy with who I am. I have a really good quality wig - absolutely no one can tell I'm bald (I've ordered a new Freedom wig that I'm very excited about) and I've had permanent makeup applied to my eyebrows and eyeliner. The eyebrows were the absolute best decision I've ever made. I feel so much more like myself now.

In short, I wouldn't recommend the cyclosporine. It really got my hopes up. I was so happy and so excited when my hair grew back. It was devastating when it started falling out again in giant clumps. I'm never putting myself through that again and I wouldn't wish that on anyone.

I know this is really hard. I've had AA for about 13 years and it's taken me this long to come to accept it. My heart goes out to you.  Cheri

Permalink Reply by Vicki on March 24, 2016 at 2:03pm

Hi Cheri  Thank you so much for getting back to me.  I think you have confirmed that I dont want to try Cyclosporine - the thought of having to be on something that strong forever (and then  it might not work) scares me.  I am now trying a trial of LDN which has minimum side effects and works very differently from the other drugs offered.  I have just booked myself in for permanent eyebrows at Tracie Giles in London.  I hope I like it!  What do you think of the eyeliner?

Permalink Reply by Dom on March 24, 2016 at 2:44pm

I have had semi permanent eyebrows for three years. Love them. They have a colour block which is overlayed with hair strokes.

Wish I had done that a few years back. Alopecia world put me on to it.

Discussed eyeliner (eek) but instead the artist( thats what they are like if they are good) encouraged me to have black dots along my bottom eyelid. I think it looks great. Maybe next year I will have the top lid done.

Recommended to anyone with no eyebrows/lashes (male or female) Even blokes have them done now.

Permalink Reply by Cheri A on March 24, 2016 at 3:24pm

I know, the eyebrows are amazing aren't they? I'm thinking eyeliner on men is a little more complicated. :)

Permalink Reply by Cheri A on March 24, 2016 at 3:23pm

Hi Vicki - I checked out the Tracie Giles website. They do fantastic work. You'll love your eyebrows!

I'm not sold on the eyeliner quite yet. It wasn't painful at all to have them done but is was really unnerving. My eyes were NOT happy. I ended up with quite a thin line but I wish she had done a thicker, more conventional looking eyeliner. It looks like you have that option where you're going. I would do that if I were you. I still have to put eyeliner on every morning. When I go back for my follow up appointment I'm going to ask for a thicker line.

All the best...Cheri

Permalink Reply by Dolly on May 18, 2016 at 2:12am

Hi Cheri Allen, I had an appointment at the university hospital and they discussed cyclosporine. Would you say that when your hair fell out again a year later, that the cyclosporine made it worse and permanent? Or would you have gone AU anyway? They say you have the best chance with cyclosporine if you are AA less than 4/5 years. But I don't know what to beleive.

Permalink Reply by Scott on May 18, 2016 at 9:39am

Hi Dolly,

When I was AA my dermatologist suggested I try cyclosporine. I had been AA for 8 months, but after going on cyclosporine my hair started thinning all over, and I was AU within 3 months.

Maybe I was heading towards AU anyway, but it did seem odd that the transition to AU occurred whilst on cyclosporine. No hair since, except for a whiskers whilst on prednisolone (to treat eczema).

Permalink Reply by Rachel_UK on May 18, 2016 at 6:29pm

I suffered from hair loss only one set of eyelashes and one eyebrow for around ten years. I started on Cyclosporine for my Psoriasis and my eyelashes grew back. I stayed on this treatment for around 2 1/2 years, and I did lose them again before ending the treatment. 

I've since progressed to almost AU now after stopping the treatment around a year ago (had a huge bout of hair loss after starting Humira around Christmas). I'd like to restart the treatment, but under doctors orders I'd need to give it more time before restarting.

Permalink Reply by Dolly on May 19, 2016 at 1:25am

But Rachel, would you want to start cyclosporine again, eventhough it made you progress to AU? Or don't you think it's was due to the cyclosporine? I have thought about it a lot, also taking Scott's storie in mind and I've decided to focus on LDN for a while. Cyclosporine I will only use, if I'm going AU.

Permalink Reply by Rachel_UK on May 19, 2016 at 6:52am

I think it kept my Alopecia under control (but not totally) - my most recent hairloss seems to have been triggered by Humira injections which I started around five months after stopping Cyclosporine.   

I would 100% have taken the cyclosporine again if my Dermatologist had allowed it, as I know its treats my Psoriasis very well, and has improved my Alopecia in the past (when it was much less severe)

Its so hard to predict what will happen, some treatments work well for others whilst it can make others worse. Our bodies are so unpredictable. Go with what you feel most comfortable with :) 

Permalink Reply by Cheri A on May 19, 2016 at 7:07am

Hi Dolly, I really wish there was an easy answer. The cyclosporine did a really great job for me for about 2 years. I was starting to consider reducing the dose to a maintenance level when my hair starting falling out fast and hard. I have no idea if the drug encouraged the AU or not. I doubt any doctors know that either. This disease is so unpredictable and seems to behave differently for everyone. What I do know is that I would never go on it again. Growing my hair completely back and then losing it all again ripped my heart out. My body was also very angry after I went off it. I got a serious rash all over my body that I'm still recovering from. I'm much happier now with my awesome wig and permanent eyebrows. It's such a relief not wondering everyday how much hair I'm going to lose or not lose in the shower. Best of luck Dolly with whatever you decide.

Permalink Reply by Dolly on May 19, 2016 at 7:49am

Thanks Rachel and Cheri Allen! I spoke to the doc today and told him I'd rather wait. As soon as I'll be bald, I might consider it. For now, I'll buy a wig (have made an appointment already) and focus on the low dose naltrexone. I have faith that on the longterm ldn may be a solution.

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