Hi, I am trying to find a dermo that will try Squaric or Cyclopropenone or DNCB on me. I've exhausted myself with usual topical stuff and the thought of getting cataracts from continued steroid injections is scary. ( I broke down and got 2 shots to get eyebrows again, they are 6 months old now and lasting OK ) If I can get any of the 3 above covered on my insurance I will be able to give you a case study! Apt. is this friday Wish Luck!
Yes! I tried it and it's NOT FUN! However, it is bearable. I started it in November 2007 and decided to stop the treatment this April, so basically I only did it for 5 months. I think it's recommended to do the treatment from 6 months to a year to actually see if it will work, but I had had enough. I got a treatment once a week, and by my third one I thought I was going to crawl out of my skin because of the itching!!! But as your body gets used to it and you get more and more treatments, the itching lessens...it never stops...but it lessens. With my experience, I had to keep it on my scalp for about 24 hours, and I couldn't wear my wig the day it was applied.
Okay, so does it work? First of all you have to make sure your body will react to it, and then go from there. For me it took about 2-2 1/2 months to start seeing hair growth, and at this point I had probably lost around 60-75% of the hair on my scalp. The hair continued to grow as I continued to get the treatments, but there were still some bald spots that refused to grow. And then, while I was still getting the treatments, I started getting NEW SPOTS in the new hair growth! The nurse at the dermatologist's office told me that people don't usually get new spots while they're still doing the treatment...if new spots occur it usually happens after you've achieved total new hair growth and you've stopped the treatments (some of my hair has also grown back white--it's supposed to be light brown). And now, about 2 months after I've stopped treatments, the new hair that had grown back from the squaric acid is really starting to fall out, even more than before when I was still getting the treatments. I've read that the acid only works when you're actively receiving the treatments, and then a lot of people lose their hair when they stop. It was not a very fun experience, but I think it does work for SOME people. Another woman (who had lost all of the hair on her scalp) who was doing the squaric acid treatments at the same dermatologist as I was did the treatments for 4-5 months, had complete new hair growth, and then started getting new spots about 1-2 months after she stopped the treatments. I had gotten to the point where I HATED going to the dermatologist for my weekly appointment...the itching and burning is not fun at all, but for some people it may be worth it. Sometimes they applied too much of the acid and my head not only itched, but BURNED! And they had to order the acid from California and it would cost around $200 for a new bottle (not covered by my insurance) because they had to ship it overnight in dry ice. I had to pay the $200 twice.
The doctor then recommended putting me on a pill called Cellcept because she felt like we were behind in treating the disease, but I opted not to. There were side effects and such that just weren't worth it to me (such as birth defects if you get pregnant, etc.). ANYWAYS, I've officially written a book to a very simple question...SORRY! If you wanna know more about my experiences feel free to message me. Good luck! :)
Hi. my 6 year old daughter started SADBE actively in March. We started the process in Dec, but because of her strong reaction we had some set backs. First, you have to do a skin sensitization test on your fore arm. If you produce a rash then your body is responding to the squaric acid. My daughter broke out in blisters 10 days later and we had to wait for her to heal before starting. Once we started in January her arm picked up the signal and we had to let her body calm down. Finally in March we started weekly treatments in a small area and have now been able to do a larger area. The end of May she developed a rash on her body which the derm believes is from the treatment. She said it was a good sign that her body has been upset and that she has seen patients regrow after this. It is 3 weeks later and we started again with a smaller dose. So far she is doing fine and we have finally noticed some signs of possible regrowth. My daughter is seen a Children's Hospital in Boston. The doctor is skilled with this treatment and has seen patients in permanent remission. Yes, you get itchy. My daughter has been a trooper and wants to keep going. There are a few different forms of squaric acid, DCP, DCNB and SADBE. While they are similar the chemical is slightly different. I have a few articles bookmarked if you want to read up on the treatments..Cindy
The best results with contact sensitizer treatments are achieved in 40% of patients. Meaning that 40% of patients will experience acceptable regrowth...with no guarantees that it won't fall out again.
The most personal of decisions is to decide if you want to risk treatments with potentially unknown and potentially serious side effects to treat a skin disease that's doing nothing to harm your current state of health.
I tried the Squaric acid therapy years ago when I was a small child. It was not fun AT ALL!! My skin is so sensitive that the smallest possible dose caused me to blister and burn like I had been put in a vat of boiling water. My parents and I only did like two treatment sessions before we stopped, mainly because my mother didn't want the scars to disfigure me in any way. I have one scar on the top of my head left from those treatments to this day, but it is almost not noticeable any more. I would NOT recommend it to anyone, because at the end of the day, what is my lack of hair really affecting? Sure, I may need to use a stronger sunscreen, but because skin cancer runs in my family I have to do that anyway. Much better to let nature take its course and just be me !
A link to a published report on a particular side effect is on your page. In regards to how well it's tolerated....the protocols have evolved over the years as the growing number of cases have given the doctors more information. The concentration and dose have been modified considerably so that it is no longer as uncomfortable as it once, yet enough to produce a therapeutic effect. That said, it's still something to think about seriously before deciding to use it. Hair can continue to fall out in untreated spots or again in the same spots.
Jenn, i tried the DPCP (squaric acid) treatment for a year at the Cleveland clinic, and had no results other than a few downey hairs occasionally. I also during the treatment starting getting pains in my joints. They then diagnosed me with Rhumatoid Arthritis! It may of been coincidence but I have to think it may have triggered this. I would stay away from it! I think when you tamper with your immune system you can create other problems. Hope this helps, Bernie
Permalink Reply by m on January 27, 2009 at 3:05pm
I had a recent experience with squaric acid treatment that I'd like to share:
I first went to the dermatologist on for a consultation. The doctor put a small drop of the acid on my arm so that my skin would react when it was applied to my head. From what I understand, squaric acid does not occur in nature, and you will not be allergic to it the first time you are exposed to it. However, my skin did react and I ended up with a large (approx 2 inches by 3 inches) red scar where the acid had been applied. I returned several weeks later (I would have preferred to see the doctor sooner, but I was away visiting family over a week over christmas) for my first treatment. The doctor was surprised that my arm had reacted, but applied the more dilute acid to my scalp anyways. That night, my scalp burned! I didn't sleep a wink. I was miserable. I went to work the next day, and felt like I was going crazy from the intense itching. My scalp was swollen and blistered. I called my doctors office 4x a day for 3 days and left countless messages until finally someone called me back. The nurse told me I should come in to see a doctor, so I took the day off from work and went in. The doctor gave me prescriptions for both prednisone and cortisone. However, I went to fill then at my local pharmacy... and he had forgotten to include dosages! Again, I called and called my doctor with no response. Finally a week later the doctors office was able to sort out my prescriptions and I was able to fill them.
It has been about three weeks since I finished the prednisone. My entire scalp peeled off or fell off in flakes. Also, I have a scar on my arm and on the back of my neck. I don't know yet whether or not they will be permanent. The one on my arm is still quite red and dark, and is still about 2 inches by 3 inches. I use the prescription cortisone on then twice a day.
If you're going to try squaric acid... I would definitely suggest finding a good, responsive doctor. If I could do it over again, I would discuss in more detail the level of reaction that is normal/desired, and maybe have a contingency plan in place in case the reaction is stronger. It's good to be prepared!
All that being said... I might try the squaric acid again. I am on the downswing of what was almost total regrowth. I am losing hair extremely fast and worried about it. I don't know yet whether or not it will be worth it for me to continue, but I do think about the possibilities...
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