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Comment by KarenGinny - Iowa, US on September 6, 2013 at 4:58pm

Kath, sorry you're feeling down, I think we all feel that way about ourselves sometimes with this condition. It's funny how every doctor seems to have a different strategy with this condition and the drugs we use. I just talked to my new dermatologist after he reviewed my previously done biopsy and he wants me to start Hydroxychloroquine, whereas my other derm didn't want to use it because of side effects he said were bad. My new derm said the side effects were minimal and rare. He said I should try it for 6 months to a year before we'll know if it's working. I've been doing nothing for the past year due to my old doctor giving me no hope, but now my new doctor says it's worth a try. I have lost a lot of hair in the front & sides and it's gotten worse in the last 6 months I think. Getting hard to hide it now but I'm not ready for a wig. I took my first hydroxy pill today and I hope I don't have the stomach problems, but if it does cause loss of appetite, I could live with that.

Comment by Kath UK on September 6, 2013 at 4:24pm

For the first time in a while I feel a wee bit down. Saw my dermatologist this week and she basically said I should stop taking the hydroxychloroquine (Plaquenil) because it hasn't worked for me. She said there were other immune suppressing drugs but they had potential bad side effects and were not proven to work anyway. I said I didn't want to take anything with a risk of bad side effects.
She said that I could continue with the clobetasol lotion and she didn't need to see me again. She said FFA tended to be self-limiting (I knew that already) but every case was different.
I'd be interested in hearing what other people's dermatologists say about how long you should take the hydroxychloroquine as I only took it for about 5 months. My dermatologist said that if it was going to stop the FFA it would have stopped it in the first few months.
Oh well. I guess that's my last treatment hope gone for just now - until they come up with a new medication.
At least I've got my pretty hairpieces. Think I'll go out tomorrow and buy a nice new pair of shoes to cheer myself up!

Comment by April on September 6, 2013 at 4:16pm

Sam, yes they did the shots basically where the hair loss is and around the perimeter.

Comment by Sam on September 6, 2013 at 2:40pm

I totally get it! I'm terrified of medications too! I didn't notice anything after shots, which is why I will try a couple more times and see. It was done where I have hair, 1 cm back from hairline so dents not noticeable if it does happen is my thought...did they your doc do where u have no hair? I am wondering if that is the case on people that have the indentations and the doctors should do where there is hair as it cannot prompt new hair growth. Yes on lattise, I just do 2 drops that seems to go long way, just along hairline. I do see new growth and figure if its intended to prolong growth maybe it will work long enough to get all else in check. I used a topical last night for first time and that I may stop that or just do one spot Bc I feel like I noticed more loss this morning...

Comment by April on September 6, 2013 at 2:23pm

Thank you so much Sam, i think you are right. I was reading through your recent post. Are you using the latisse on your hairline as well? Does it seem to be helping? I too have worried about my daughter's reaction to me losing my hair. Let us know how the shots are working for you. I got one round of shots but i refused further treatment because I felt like a starting losing more hair after the shots, and I have a dent in my forehead. I'm probably the worst patient because I am scared of medications...anyhow, welcome to the group!

Comment by Sam on September 6, 2013 at 8:03am

I say you will never regret a healthy baby... I wouldn't chance the side effects as that is the first question they always ask me if I want to be pregnant. Maybe the hormones from bring pregnant will do the trick and try vitamins and diet in the meantime. Good luck on both fronts!

Comment by April on September 6, 2013 at 7:42am

I haven't really tried most of the treatments that are out there, mainly for fear that it will have a negative effect ony ability to get pregnant...not sure if this is the right decision...I just hope I don't regret it later. I know there are a few of you on here that might try for a baby. What have you guys used for treatment ?? Thanks!

Comment by April on September 6, 2013 at 7:22am

Debs, I have started researching the anti inflammatory diet and will hopefully start making some juices this weekend. Can't hurt right? I am pretty much not doing oral meds at this point because of the reproductive effects. If you get pregnant on plaquenil it is BAD. I am on the fence about the clobetasol because it is a testosterone mimicking drug. I guess the fact that I want to try for another baby complicates things a bit. I may go back in the laser treatments as I do believe they were at least sliwing down hair loss. I am starting tea tree oil shampoo to try to help with itching and have ordered some biotin. Worth a shot I guess. My hair has been falling out a lot more these past few weeks. It's been stressing me out a lot...Debs, do you feel dr. Weils diet is helping??

Comment by Debs on September 5, 2013 at 1:34am

April, I am doing the anti-inflammatory diet, check out Dr Weil on the internet for full details. It is not too heavy on protein and is promoting veg and fruit with other foodstuffs in moderation. I don't have any problems on it and you should find the amount of roughage in the veg and fruit helps your digestion.

April, have you also tried the hydroxychloroquine sulphate (plaquenil) that is a common first drug used by derms for FFA and has a 50% success rate.

Comment by April on September 4, 2013 at 1:43pm

Hey everyone! I have been pretty crazy lately so I have not been on here, trying to catch up with everyone's comments. I just wanted to update everyone as to what is going on with me. I saw my doctor today. About a month ago I completed my 10th treatment with the xtrac laser and received one rou d of kenalog Injections. We aren't really sure whether either of these are helping or not. I am still, slowly losing hair at the hairline. But we are not sure if it would have been worse without the treatment. Ugh, pretty frustrating. Anyhow, I didn't want to continue with the injections because I did develop some atrophy of the skin where they injected me. Nothing horrible, but you can feel a depressed area on my head. My doctor said that eventually resolves itself. Anyhow, now he wants me to try clobetasol and rogaine. I may go back on the extrac if it turns out it was helping. Not thrilled about trying these drugs. But, I know some if you have tried these. Anyone have success with these things. I'm worried it could make things worse? So frustrated here! My doctor is confusing and I'm worried maybe I should still be on the xtrac treatments? Ugh! Sorry I'm not being more positive. On another note, I am also going to see a rheumatologist for the widespread body aches and pains, fatigue etc. I have been dealing with this for about 6 years so also trying to get to the bottom of it. I had to abandon my paleo diet because it was actually making my symptoms worse, not sure why. I am still eating healthy but have had to add grains and potatoes back in. I was having trouble digesting all of the protein I was eating I think, anyhow, sorry for the long post. Hope everyone is well, I am learning a lot from your comments. Thanks!

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