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Comment by Donna on November 4, 2017 at 1:23pm

AnnieMay, I have been losing my hair since I’m otmreally sure when. But in June really noticed how bad it was getting. Went to Dr. in early Oct. & she prescribed topical corticosteroid (Clobetasol). It is suppose to help with the inflammation that causes the hair loss. I hope it is working. I’m still losing hair some hair. My scalp is not dry. I am also going back to see the doctor at end of November. I’ve decided I do not want injections like she said would be next step if this didn’t work. I am going to ask about Dutasteride like you. Let’s check back after our appts. & compare notes!

Comment by AnnieMay on November 4, 2017 at 12:47pm

I was diagnosed in April and my dr has only prescribed topical steroids and tacrolimus lotion. Like so many of you I'm not sure why because it seems that steroids are ineffective for hair loss and FFA? I honestly feel like the shiny scarring along my hairline is worse since I started using the steroids and my scalp seems so dry and I know I've lost more hair. When I first started having symptoms I started using a product made by "Just Natural Hair Care."  They have a lot of products but I used the adult Women's hair loss treatment which is made without any chemicals and all natural oils. I used it again last night and I love the way it calms down my scalp and makes my hair feel soft. I think I'm going to take a break from the steroids and go back to using this for awhile! I have a dr appt later in Nov (dread having her inspect my hairline) and I'm going to ask about dutasteride as well although I would prefer not to take anything. But I have to feel like I'm doing something . .  

Comment by Donna on November 4, 2017 at 1:03am

I have been using dry shampoos now for a couple weeks. I like that it give my hair more body. Also the rogaine give more texture. But it makes my hair dry I’ve noticed. So last night I rubbed castor oil through my hair as a conditioner & washed it out the next morning. It was incredible. It wasn’t hard to wash out but I have very thin hair as is common here.my hair felt wonderful. Soft & shiny. I will definately do again. Think it’s recommended two or three times a week. I won’t be doing it that much. But I highly recommend. I’m also putting on my eyebrows, I think I’m seeing new growth. Look it up. Lots of info. Out there on the great benefits it has for hair.

Comment by Mattsmate on November 3, 2017 at 12:03pm

I am using it but as a compounded topical. I had blood clots a couple of years ago and taking it orally May have a deadly side effect for me. It has a similar effect to finesteride in that it can convert testosterone to estrogen. This was the trigger for my clots. But by using it topically, hopefully I am getting the effect without the danger.

Comment by Nancy79 on November 3, 2017 at 10:35am

I knew there was something wrong with severe itching of the scalp. It did not take years for me to notice something was wrong. I found a small 1/4 inch wide and 2-3 inch long strip of hair missing behind the hairline on the right side of my forehead. I could see the follicles were red with a lighted magnify mirror. There were red follicles on the left side of the forehead but no hair loss yet. It has been five years later now but this side has finally dropped out too. I have lost a 5 inch long 1/2 wide strip along the front hairline.

Dermatologist seem to be the only docs that deal with hairloss so I let one burn my scalp with clobetasol. But the was the last one. My own research 5 years ago at a university medical library showed that most if not all of the treatments that had been tried had little to no effect on FFA but did have a lot of bad side effects. A study by Duke compared all the treatments on FFA and concluded Dutasteride had a 50-60 percent chance of arresting it with little to no side effects.

Dermatologist refused to write the script but my general practicitioner did. I can dig the research paper up if you need it.

I had noticed it was taking less time to dry my hair before the itching started so I think I was having defuse shedding over the head as well as the FFA starting up. Overall shedding stopped the first week on Dutasteride. The itching stopped with 1-2 weeks and the follicles were no longer red soon thereafter. The hair loss in the rest of the affected follicles slowed so much that I did not even look at it a year later.

I have had no side effects. I find it funny that people are willing to take drugs that can permanently harm their eyesight or shots that thin the skin and trickle down the forehead so much that the blue veins show thru and they are permanently disfigured but are afraid of this drug because adverse side effects have not been determined yet. The drug in generic form only cost me $10 per month at Costco. That is less than my insurance copay so I just pay cash for it. Hopefully it is that cheap in your area.

Consider me a 5 year test case. I have had no ill effects. Last summer I tried to cut back and take it every other day but quickly the overall diffuse shedding began again. After about 4-5 weeks I could no longer stand it and went back to taking it daily. It took a couple of months but the overall shedding stopped and I am back to normal now.

This is how the drug worked on me and I wish docs would try it first and not last with women.  Women seem to lose so much hair in the meantime and expose themselves to bad side effects and extreme expense.

Comment by Jules Australia on November 2, 2017 at 8:56pm

Hi Nancy79, it is good to here that you have had success with dutasteride without any side effects & the disease seems to have reached burnout in your case.  Have you experienced much scalp pain tenderness ichiness etc before starting on it (&/or while taking it) & how long were you taking it for before noticing a difference in symptons, including hirloss activity & scalp sesitivity (or did they continue but at a milder & slower rate of hairloss)....What has your general pattern of loss been & over how many years since it started..??? I think that most doctors (& the majority know nowhere as much about this disease as many of us on this site) probably take a precautionary action in prescribing dutasteride to women (even those past childbearing age) as "available data with regard to dutasteride side effects in women is extremely limited"... Refer to article sciencedirect.com/science - March 2017 Elsevier Intl Journal of Womens Dermatology - "Hormonal Therapy in FPHL"..."dutasteride is not approved for treatment of FPHL by the FDA; ongoing studies on the efficacy of dutasteride inhibitor are promising but largely focus on male patients (2014)"..... The article also mentions the theoretical risk of breast cancer in use of dutasteride as mentioned in relation to finasteride (Kelly et al 2016),as they are both in same class of hormonal therapy 5-alpha-reductase inhibitors. My understanding is that it has had some positive results for androgenetic alopecia & limited shown for FPHL but have you read any articles/studies for effectiveness specifically in ffa/lpp.? Sorry for so many questions, but you sound like me, having done quite a bit of research on this disease, ...which i wish i'd  never heard of....but nerertheless am stuck with....& its anyones guess for who knows how long...!!!!  Thanks jules

Comment by Christi Q. on November 2, 2017 at 10:16am

I am on Dutasteride, and I can only guess that it has slowed the whole process down along with my daily Rogaine application.  

Comment by Nancy79 on November 2, 2017 at 9:06am

Dutasteride 0.5mg daily has a 50-60% chance of arresting the disease where it is at with little or no side effects. It worked for me 5 years ago. I do not know why it is not mentioned more on this blog. It is worth a try.

Comment by Jules Australia on November 2, 2017 at 8:36am

Hi Agneta After much research on this disease & treatments commonly prescribed, i made a concious decision not to use any of these drugs. Pretty well any of the articĺes on the subject state uncertainty as to whether there were any real benefits fr

om the treatments/drugs taken etc or if improvements in symptons were simply  a result of the natural course of the disease process. They mostly seem to be pretty harsh drugs with potentially harmful side-effects & i just felt the risk not worth it....Having said that, I would never place judgement on those that decide to go down that route as it is a horrible thing to be living with 'day in day out' & understand the desperation people feel.... I myself have often found the symptons of this ghastly condition to be extremely emotionally & psychologicaly distressing & disturbing. But other than the emotional disturbance & challenge of trying to LIVE WELL  whilst having to deal with the relentless symptons of LPP/FFA, i have experienced exceptionally good health most of my life, 59 years, & just don't want to risk jeapardising that from harsh drug reactions (short or long term). My own symptons have waxed & waned (without any medication) over the past 5plus years.....the whole senario is just a mystery to me......Has your loss been slow & have you also had much pain/tender/itchiness with this or hair texture changes as well, ....?

Comment by Jules Australia on November 2, 2017 at 4:41am

I forgot to mention that i had pretty thick hair before all this started, & it mostly felt nice running my fingers through it; the texture change was pretty awful.....it has become much looser softer over past few years, but it is getting thinner & thinner, diffusely & still moving back from forehead  & all around ears slowly but surely. I believe i had a lot of  hairshafts diffusely over my scalp (from my relentless research) that looked like something called acquired pili torti.....

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