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 September 16, 2012 at 11:50am

I doubt very much if it is chemicals from the hair dye, or FFA would be much more prevalent. I have only had mine coloured since it started to go grey, so I am not a long term user. I am 66. It would be far too depressing to let the grey grow in - I'd certainly have to get a wig if I was going to do that.
I am not saying it is not chemicals to blame - a wide range of chemicals in water is causing hormone disruption in fish and also contributing to male infertility - so may be a factor in FFA also.

Permalink Reply by Debs on September 17, 2012 at 11:29am

Hello Celia, I agree with you that lots of women dye their hair and don't experience FFA, also I can't see how it would only affect the front of my scalp when the dye goes all over my head. This is a theory that he and several other derms have, it is not conclusive... I am thank goodness a fit and healthy woman, I have never smoked, I drink in moderation and have a good diet. I therefore don't think I have done anything to make this happen... I think it is more likely to be something in the environment that has triggered this response in my immune system. The results will be ready in a few weeks, however they have limited appointments so that is why my can't access the results for about 6 weeks. I can see from the comments from other ladies that I do have FFA. It is frustrating there is not a proven treatment. How are the 3M drops working out. I also saw that Daily Mail article. X

Permalink Reply by MairiM on September 17, 2012 at 12:53pm

Me too - healthy, good diet, never smoked and drink in moderation. Becoming less fit, though, as I am more reluctant to go out. Will be easier as weather gets worse as I can wear a hat! Does anyone know what is in the 3M drops?

Permalink Reply by Heidi Short UK on September 17, 2012 at 4:32pm

I am currently on Quinoric hydroxychloroquine sulphate 200mg once a day and demovate (steroid lotion)twice a day.If I'm honest I don't think it is doing much. I don't suffer from an itchy head but I have a few tender spots and if I tap my head by mistake with my hair brush its agony! I,m going to see a different doctor in october ( nhs one) I don't know if they will come up with anything different to try!

Permalink Reply by PamW San Diego, CA, USA on September 17, 2012 at 8:02pm

Good luck, Heidi! I am going back to my derm early October and will ask if she can prescribe Finestride. I think the reason it is not prescribed for women is because if you take it and you are in the child bearing years, it can damage a fetus. I think that boat has sailed for all of us.

Thanks to CJ, I found more info from LPP sufferers in a group on Facebook. Many people talk about being on a gluten free diet and/or a "paleo diet". Some of the women don't even take any meds, just try to control things with diet. I don't have that kind of faith yet. So many have been prescribed Plaquenil (hydroxychloronquine) so it must work. Right???? Otherwise, why would so many of us be taking it????

Permalink Reply by PamW San Diego, CA, USA on September 17, 2012 at 8:10pm

I also wanted to mention that my derm did not think Propecia/Finesteride would work because our hair follicles are scarred. I told her what Chris said about stimulating the "un-dead" ones; and she said ok. She is willing to try anything as long as it doesn't harm me. She also said that coloring hair doesn't harm our follicles. She said the damage to our follicles is deep down. When the follicle is inflammed it scars over as a way of protecting itself from the inflammation. The hair falls because the follicle has closed up. Nothing else can grow.

Some people on this LPP Facebook page talk about regrowth, but it doesn't make sense to me.

Permalink Reply by ChrisC. Chicago, IL on September 18, 2012 at 11:17pm

I'm seeing Dr. Barbosa as a second opinion on Thursday and want to ask her about my current meds. The crazy hair loss from last fall has stopped but the hairline has certainly crept back a bit more. My scalp was sensitive before and it is rarely ever itchy now. I do still see the reddish area around the base of the hair follicles in the front—which sadly is showing there is still alot of inflammation. You still can't tell if the Plaquenil is working at all? I want to ask her about Actos and if that is too risky. I read somewhere that the average active phase for FFA is 3.4 years. . . has anyone ever seen any timeframe for the loss? I'm going to ask Dr. Barbosa that as well.

Permalink Reply by PamW San Diego, CA, USA on September 19, 2012 at 10:06pm

Chris, I am wishing you so much luck! I hope you get good news. On the Facebook web site, some people with LPP (FFA is a type of LPP) say that they have had the disease for years and years, and that it never burns out. I was wondering if it is possible to stop the hair loss -- or if it is inevitable. How long do we stay on Plaquenil before we decide to try something else? My appointment with an "expert" isn't until November 30. I hope I still have some hair to talk about.

Permalink Reply by PamW San Diego, CA, USA on September 20, 2012 at 10:43pm

How did it go for you at the doctor's today?

Permalink Reply by MairiM on September 25, 2012 at 4:04pm

I am supposed to be getting Clarelux shampoo(clobetasol) AND the Bettamousse tomorrow - village chemist hopes to get them, anyway. GP prescribed both but I have to choose which one I use as both are strong steroids. When I get the Clarelux I will see if I can tell you the strength compared with Dermovate. Prescriptions are free here. GP felt I should try both - feel tempted to do half a head with one and half with the other! Is it the case with everyone that the right side has gone more than the left?

Permalink Reply by MairiM on September 26, 2012 at 4:10pm

Not strictly speaking meds, but my hairdresser last week used Aveda Invati products on my hair. It is expensive (haven't actually bought it yet) but I notice that the conditioner and the scalp revitalizer contain turmeric and ginseng. Just another little thing which might help. The lovely smell is cheering anyway, after the messy nature of the other meds.

Permalink Reply by Liz on October 2, 2012 at 4:06am

Hi Chris. I was diagnosed with frontal fibrosing alopecia last week and I keep telling myself that things could be worse, and things could be worse but that doesn't stop me feeling sad about what's happened to my hairline. In the past week I have become obsessed with looking at peoples hairlines when I'm out and about :o( I've told a few friends about my hairloss and I am happy when they say that they have noticed, becuase those who say they haven't I think are just trying to be nice. It's a bit like when you say, 'Does my bum look big in this!'. You know when people are trying to spare your feelings.
I have to see my doctor on Thursday to discuss taking steroids and hydroxychloroquinine. I am worried about the later medication becuse the doctor told me it can cause eye problems and I already have eye problems, I don't want to add to them. The doctor didnt mention to possiblity of taking minoxodil but I think I will mention it. Any advice re medications would be appreciated :o)

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