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Need advice on squaric acid protocol
After two years of battling diffuse AA, my derm has agreed to try squaric acid, however, he admits that he has never performed this treatment so I am going to be a guinea pig. Not very comforting to say the least. Could anyone please tell me what their doctors did to perform this treatment so I can have some idea if he is doing this correctly and what to expect. Thanks for any advice.
Replies to This Discussion
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Permalink Reply by Nikki's Mom on
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Hi Starshine. My daughter has AA. We tried all kinds of topical treatments, then painful injections. We decided to try squaric acid. Its been 5 months and i am cautiously optimistic as i am seeing hair grow back all over, lighter thinner and taking a long time but its a start. The treatment is not too painful. When the doctor increased the dosage, the effect was like poison ivy but went away after a couple of days. I am in NJ and we go into NYC once a week so the doctor can apply. Im not sure what the end result will be but it seems to be working more than all the other stuff we tried. Good luck to you....stay positive!
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Thanks, that is encouraging. Do you know what percentage she is getting and how many treatments?
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Its once a week. We started out with i believe .05 and have moved up to 1%. Also they do half the head (so they can compare growth on the side without medicine). Two weeks ago they started doing her whole head since the results are looking better. Its very slow and there is no guarantee but ill take any little bit of hope I can get. If i can help, please let me know. As you can tell, you are not alone so keep the faith! :). Also before I forget....the application consists of simply brushing on 2 different types of a liquid medication, then the head must be covered for 48 hours. My daughter wears a soft tshirt like skull cap to bed and a baseball hat to school. Your head cannot be exposed to light for the 48 hour period.
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Thank so much. I hope it works for your daughter. I have heard that this treatment works especially well for children. One more thing, I assume your daughter still has some hair. Do they put it over the whole scalp even if there is hair? Also, does she take anything for the itching like Benedryl.
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To be honest...she has no hair but we are seeing regrowth with this treatment. When we did the other treatments, she still had some hair but the rest of it quickly fell out. So, she is pretty much bald except for a few strands (literally like 10). When we started, the treatment was done only on half the head (to be able to compare the side that was untreated). But two weeks ago, the doctor started applying on the whole head as we see tiny regrowth even on the untreated side. Not sure if all this is the medicine or if it's coincidence, but I'll take whatever I can get. As far as the itching...the doctor prescribed a topical cream to stop the itch and I pretty much slather it all over her head and then put her skull cap on. It really helps. I am by no means an expert in any of this..my husband, myself and our son have thick full hair so we are not sure where this all came from but if I can be of any help or if you need someone to bounce things off of, do not hesitate to ask!
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Thanks Nikki's mom. I know many other people have this, but I have yet to meet any in person and I do get depressed at times. Your daughter sounds wonderful and I am sure this is very difficult for you also as a parent. I also had never heard of this until two years ago and have no idea where it came from. Thanks for the encouraging words and I wish the best for your daughter.
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I wish you the best too. Just take it day by day. We just got back from her weekly visit and its slow by encouraging. Im going to ask the doctor next week about the 48 hour thing. I remember in the beginning they said to leave on for 48 hours so it can seep in and counteract the white blood cells. But i will ask anyway!
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Thanks so much. If you don't mind, let me know what he says. I don't start treatment until July so I am trying to learn as much as I can before my next appointment. I like my dermatologist, but I know he is not that experienced with AA in general, but he is very nice and is really trying to help.
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I definitely will. We go every Monday so i will keep you posted. Have a good day!
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Hi Nikki's mom: I just saw my derm and she did a "test" sensitization spot on my butt, strange, but whatever works. Now the spot has turned a bluish/gray color and looks bruised, but is not red or itchy. I was told to wait two weeks and then let the doctor know what it looked like. I was wondering if your daughter did some type of similar sensitization and what it looked like before it was applied to her scalp. Oh, she also told me to use Clobetesol on my scalp even before we start treatment on the actual scalp and to continue using it throughout the whole process. Thanks.
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Hi Starshine. We did have a little bit of that bluish tinge the first couple times but it quickly went away. Your initial lack of itch could mean that you can tolerate a little higher concentration (maybe im wrong but i know that Nikki's doc gradually built up the concentration whenever we got to a point that there was no itching). Apparently the itching is a good thing. We didnt do anything to sensitive it. I think she had been through so much with all the shots prior that this is a piece of cake! Keep me posted. Going to doc on Monday so if you need some info, let me know!
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I lost almost the entire back of my head (along with much of the top and sides. I underwent 12 weeks of squaric acid treatments that I gave myself. I'd paint it on very lightly using a tiny paint brush and put it any place my hair was gone on my head, except anything in the front. That's because the treatments would cause very red, sometimes raised, patches from where I put the SA. I would put it on at night for an hour and then shower it out. I'd have a sleepless night, though Benadryl helps as does clobetasol, and then it would get better...until the next week and I'd start all over again. After 12 weeks, I started having regrowth. Now I've got regrowth all over, just very very thin in some places. I'd recommend doing it if you haven't yet tried SA.
On a side note, I've lost a lot of my eyelashes and brows, a lot of my beard and mustache and most of my body hair. I'm getting some results on my brows with Latisse though.
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