Medications

Hi all, wanted to start a Medications Discussion in response to the query by Mairi and Debs earlier today about some of the meds that I am on.

I am currently on Propecia 1.25mg (actually Finestride which is the generic version) and Minoxodil foam as well as a steroid solution which is very easy to use (Clobetesol .05%).

I would say that the Minoxodil 5% did slow down my overall shedding. I used to brush my hair and there would be a layer of lost hairs on the floor. That has more or less stopped. I might lose 2-3 in the morning as I get ready for work. And the foam does add some body. I part my hair and apply in stripes from front to back on top and at the sides. I was doing 2X per day but now am doing it once in the morning.

I'm not sure what the Finestride does except that my eyelashes are really long and I'm back to shaving my legs again. . . that had stopped. It is also supposed to keep the hair in a growing stage.

I have had injections of steroid in the past year and it does make the inflammation subside. . . but the skin gets thin and dimples at the injection site so I have had to stick with the solution nightly. I just wash my hair in the morning and apply Minoxidil while my hair is damp.

I am going to a new doctor next week, Dr. Barbosa who participated in the CARF conference. I am interested in whether any of these treatments are saving hair in the long run or if FFA is going to claim the hair anyway. I'm also looking at the Whole30 diet which is kind of like the Paleo diets to see if I could adhere to it for a month. I'm willing to try anything!!

I was diagnosed through biopsy last November with FFA and lichen planopilaris. . . and my loss sounds like it is at the same stage as Mairi. . .temples and eyebrows are thin and receded and I'm noticing maybe an inch gone at the top.

I suppose there could be worse things, right?? But this seems like alot to swallow sometimes.

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Replies to This Discussion

Permalink Reply by ChrisC. Chicago, IL on November 12, 2012 at 11:52pm

Hey Liz,
I couldn't find you on Facebook, but you can add me: Chris Cigliano/Chicago,IL

Permalink Reply by Heidi Short UK on November 12, 2012 at 11:36am

Liz can you add me I've tried to find you but i can't I'm Heidi short Taunton!

Permalink Reply by Heidi Short UK on November 12, 2012 at 3:34pm

I've just gone on to facebook but I'm on your personel page, are we going to have a special page just for us with ffa as I'm not confident talking about my personel feelings for anyone to read!

Permalink Reply by KarenGinny - Iowa, US on November 12, 2012 at 3:58pm

Liz Coleman created a private group called Frontal fibrosing alopecia on facebook, so search for that and you will find it and then request to be a member. It will be private so your other friends can't see it. Hope this helps, Karen Beck

Permalink Reply by Liz on November 12, 2012 at 4:23pm

Hi Heidi. I have added you to the group. For some reason I cant add anyone until they are my friend. The FFA group is private. Nobody can see it's exisetence on Facebook or any of the posts unless they belong to the group.
Liz
x

Permalink Reply by Heidi Short UK on November 13, 2012 at 11:59am

Thankyou! I've just been on our private group on facebook, hopefully it will be easier to follow!

Permalink Reply by PJ - MN, USA on January 2, 2013 at 11:04am

I am amazed at the variety and amount of medication some of you are on. I still have a fair amount of hair on my head, so must be in early stages of FFA. Currently all I do on my head is rotate every other day between Head & Shoulders and DHS Zinc shampoo, leaving it on for 5 min. Use Free & Clear Conditioner and Hairspray. I have noticed hair growth along my temples that were receding. I do dye my hair about every 5-6 wks. I was just given Clobetasol 0.05% to apply the night before and after a hair dye. Only tried it once and not sure how it's suppose to help, I can't get it down to the scalp. Do you put it on wet or dry hair? The pharmacist did not know. I have had 2 rounds of Kenalog steroid injections on my eyebrows (which are gone) 1 round on top of scalp and 3 rounds on forehead hairline. After the last injection I have a dent in my forehead along the hairline which has gotten slowely bigger. Apparently this is a rare side effect, but I don't plan on doing injections again. I have noticed my scalp being itchier lately. I don't take anything orally for the FFA.

Permalink Reply by Debs on January 3, 2013 at 8:49am

Hello PJ, I agree with you it is bizarre how many different meds we are all on for the same condition. I too have the clobestasol lotion, my derm told me to use it (on dry hair) morning and night for 2-3 weeks if I see any redness on my scalp. He said I can use it as often as every 2-3 months. I don't have redness round my hair follicles so I only used it for 1 week back in November and have not used it since. I am also going to see Dr Harries on 22 Feb, will post what meds he gives me. Happy New Year. X

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