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 MairiM on October 2, 2012 at 6:18am

You can buy minodoxil 5% (Rogain/Regaine) over the counter or online. If you're in the UK they won't prescribe it anyway but my derm said it was fine to use it. He said It doesn't help the FFA but may strengthen the remaining hair. I am on steroids only (clobetasol)- rub into scalp. If the consultant doesn't see any improvement when I go back, I will get planequil (hydroxychloroquinine). I think he was reluctant to prescribe it because of the side effects you mention.
Someone on here said that turmeric tablets are good for inflammation also. I am also using the Aveda spray (above).
Difficult to think of anything worse - we are so much judged by our appearance. I hate the idea of people pitying me also. Very pleased we are now in the hat-wearing season in Scotland!
Where are you?

Permalink Reply by Liz on October 2, 2012 at 7:48am

I have seen Minodoxil in the chemist. I was a bit shocked at the price! How long roughly does a bottle last? If it last a few months I may get some :o) I live in Brighton. There is a shop called Trendco nearby which does wigs and hairpieces. I shall pop in there and see what they have on offer :o)

Permalink Reply by MairiM on October 2, 2012 at 3:15pm

I was shocked at the price too - but cheap at the price if it saves buying wigs in the long run :-(
I am on a pension and am thinking my holiday fund may be quickly swallowed up n future by hair stuff. I know the NHS contributes towards wigs - but how many and how much?

Permalink Reply by Liz on October 2, 2012 at 5:05pm

Hi Celia. Thank you for the welcome. This does seem like a very supportive place to be :o) I shall look up 3M drops, thank you. I have been looking in to some of the medications today so that I know as much as possible for when I see the doctor on Thursday. I was a nurse many years ago and used to look at a BNF to find out about medications. It is a book that doctors consult when prescribing medication. I found it online today and it's very informative. You have to create a login but it could be helpful if anyone is interested and doesn't already know about it. It outlines does, side effects and uses etc :o) I also went in to 2 chemists today and asked if a doctor could prescribe minoxidil. The first chemist said no and the second said, most definatly yes!
Liz

Permalink Reply by MairiM on October 2, 2012 at 6:21pm

That's good to know, as I was told I'd have to buy it myself. Will check out BNF.

Permalink Reply by Debs on October 2, 2012 at 10:32pm

The NHS will help towards purchasing a couple of wigs but you have to go to suppliers that are registered with them. A doctor has to give you a prescription and you then contact the surgical appliances department of your hospital to get a referral to their registered supplier. The wig that I am going to use, a Jon Renau, is not supplied by my hospitals wig supplier however you can get the VAT exemption from wigs because we have a medical condition and are deemed necessity wearers. The supplier removes the VAT before you pay.

Permalink Reply by Lace on November 6, 2012 at 12:20am

For those of us in the States and have access to a Costco, they carry a generic version that's significantly cheaper than the name brand.

Permalink Reply by PamW San Diego, CA, USA on October 2, 2012 at 9:20pm

Dr. Vera Price from San Francisco has published her comments/recommendations on treatment. These comments were given at the CARF conference in August, which Christine attended. I hope my link works. If not, Christine -- do you know how to post so the others can see the document?

Attachments:
Permalink Reply by MairiM on October 3, 2012 at 7:42am

Celia -sorry I missed your post. I now have a letter from Dr Matt Harries which says you can be referred to him by your GP. Really sorry I didn't get this info to you in time. I'm going to wait another 3 weeks before I decide whether or not to ask for this.

Permalink Reply by MairiM on October 3, 2012 at 5:32pm

Thank you. Yes we can see it and will read it carefully (tomorrow!).

Permalink Reply by ChrisC. Chicago, IL on October 12, 2012 at 7:30am

Hi Celia and everyone,
Just got back from a great vacation break to Yosemite National Park! Didn't think about my FFA which was great (until I scrutinized the photos). Anyway, just prior to my getaway, I did see Dr. Barbosa and told her about our site. She said she'd check it out.

As for my meds, she has changed things up a bit.
—Switched to Protopic from the Clobetesol. . . the steroid solution was thinning the skin and there was an area on my left temple that seemed especially red and irritated looking.I have been using the Protopic now for several weeks and the rough red area is nearly clear. I use it just along the hairline where the follicles are red. It is greasy so I use at night. However, when I went to fill the prescription it was over $300 for a 1.5 month supply!! I have a call into Dr. Barbosa about getting the active ingredient, Tacrolimus compounded separately through a compounding pharmacy. I had read about compounding this drug on the CARF website. It is not generic yet but should be in a couple of years.
—she said to stay with the Finestride for right now since it is growing hair other places like eyelashes and legs but was not thinking that it was having any impact on the FFA since it is a male hormone inhibitor and typically only effective for male pattern balding.
—I had a blood test that showed Vitamin D, Iron and potassium in normal ranges although to the low side of normal and I have added those to my regime. So on the vitamin side, I'm taking Biotin, Vitamin D and Iron per her recommendation as well as fish oil and calcium that I've been taking for years.
—I have to get an eye exam and she wants me to start with the Plaquenil which I think is the same as the hydroxychlorquinine as a first tier. If that doesn't work she will progress to more aggressive treatments. I've got a list that I'll have to find to share with you. I had asked about Actos and that was like the 3rd or 4th option on the list.
—She also recommended the anti-inflammatory diet which is sensible eating with emphasis on fruits and veggies and lean meat/fish. Steer clear of processed foods and high fatty food. . . which is pretty much the way I eat anyway.
—As far as how this disease progresses or burns out, she was frank with me. That this is a condition that will ebb and flow. Could subside for awhile and then re-ignite. She does not hold with the notion that it burns out in a prescribed amount of time—never to return.But she does believe in managing it with the least amount of intervention possible so starting topical and then moving up to systemic drugs. . .

So while the visit was affirming in some ways—that I'm seeing someone who specializes in the treatment of this disease, I was depressed that there is no "switching this off" or no "burnout" in sight. —sigh—

I'll need to read up on all the posts, since it has been awhile. Looks like we have more members to share with which—under the circumstances—is a good thing in the midst of a not-so-good thing. I'll check my notes and see if there was anything else to mention from my visit. Got to get going—but it is Friday. . . . Yeah!!

Permalink Reply by PamW San Diego, CA, USA on October 12, 2012 at 10:46am

Chris, hope you enjoyed your vacation and so glad that you didn't think about FFA! My doctor had me stop the clobestasol because she saw evidence of skin thinning, too. I am going to ask her about the protopic. Dr. Price has a protocol for treating and most of the doctors follow her lead. The info you have is the info is pretty much what I have received. I tried to get a prescription for Finesteride, but they said it only comes in 5 mg dose and I wouldn't be able to take a tiny pill and break it into 4 pieces. My doctor was also doubtful about it helping and was concerned about side effects like loss of libido (horrors!) and depression. I was wondering if she said anything about monixidyl or regrowth? Some people on the Facebook page talk about seeing regrowth after they follow the "paleo" diet, which sounds so unhealthy to me. I always thought that once the hair fell out the follicle was dead and nothing could regrow.

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