I am new to this forum but definitely not new to alopecia and all the trials and tribulations it brings with it.
When I was 7, I developed AU and as you can imagine it was a challenging time being a child without hair, as kids can be quite cruel to those who are different from themselves. After years of conventional and non-conventional treatments, my hair just didn’t not grow back. Fast forward to puberty, which is when my hair started to finally grow, little patches at a time. It wasn’t until I was about 17, 10 years after the initial loss, was I able to say I had a full head of hair. I of course was elated and worn my hair with pride each and every day. I had always struggled with patches of hair loss and would get injections to “plug the wholes”, which always seemed to work. Now that I am on the “other side of puberty” my hair has once again fallen out. Alopecia Totalis. As injections are not an option for me anymore, my specialist has suggested the start of DCPC treatments, which has its challenges in and of itself. We finally found a percentage that is bearable but I am still battling the “oozing” and sleepless first night after application. Does anyone have any suggestions on how to deal with the seeping and lack of sleep?
Was the most horrible treatment.I would wake up at night scratching my head raw.Do you want to be on that treatment forever because even if it works once you stop your hair will fall out again.i tried it somehow for almost a year and I was miserable very single day.I’m surprised their still prescribing it.Sorry to be so negative but it gives me nightmares just thinking about it.
Thank you for your reply and honest experience with the DCPC treatment. I agree that the treatment has been a horrible experiment. My specialist started me off with the strongest percentage and we have worked our way down to 1%, which I find reasonably bearable but still experience the oozing and burning. I am only a couple of months into the treatment and have already wanted to quit serval times due to the itch and inconvenience of the oozing, as I am not able to wear my wig the first few days treatment. I had a bit of an emotional breakdown in the specialist office before the Christmas break and he suggest we put off further treatments until the new year so that I was able to socialize with friends and family during this time. It was only approximately 3 treatments that were missed and I definitely noticed hair loss in the tiny patch of hair I have left on the very top of my head. It worried me that any new growth may fall out of I stop again in the future, just as you had mentioned. My specialist is not open to placing me on Xeljanx due to the serious side effects it could cause so the DCPC seems to be my only option at this point. Going from almost 40 years with beautiful hair back to 99% hair loss again is a lot to take in. Feeling a little defeated at this point but will solider on. If there are any new treatments worth giving a go, I am willing to try.
Thanks again for sharing your experience with DCPC.
This treatment in my estimation is a waste of time and money and causes so much discomfort. Our daughter tried it under the supervision of a doctor in Los Angeles. This is not worth your time or your money. Sorry to be so harsh, but I hate to see anyone go through this discomfort.
Thank you for sharing your daughters experience with DCPC and I am sorry to hear she also suffers from AA. Not sure of her age but knowing full well how cruel kids can be, I feel for her.
I tried to talk my specialist out of using the DCPC treatment on me, as not only did it sound inconvenient for me as a full time employee to be taking 2-3 hours off work every week for the treatments but also the side effects sounded unpleasant. Now having gone through a couple of months of the treatment, I would rather have a million injections in my head than have to go through the DCPC treatment. Unfortunately, as I had explained, my specialist would rather err on the side of caution and not place me on any meds that may have serious side effects so this seems to be my only option. He feels that once the hair starts to regrow that it shouldn’t fall out again. After my brief break during Christmas, and from what I have read online, I now have my doubts. I know everything points to AA being an autoimmune disease, but I deep down feel it has a lot to do with hormones as my hair started to grow back when I started puberty and has fallen out again now that I am starting menopause. The specialist does not agree. Feeling frustrated and defeated when I don’t have the support of my doctor. Sorry for venting... I truly appreciate your reply and experience.
Alo-mom I also went to a doctor in Los Angeles.I have been on xeljanz for awhile with no side effects it never gave me all my hair back.I might try the Barcitinib from beacon in a few months.The other problem with the dcp is if you have any hair it leaves it a big greasy mess.
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