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Bowling ball size hair ball!
Should I or shouldn’t I that is the question.
I am going back and forth on weather or not to take my P.U.V.A. treatments again. Let me give you some back ground.
I have had AA for a long time, but I found that PUVA (Ultra Violet light therapy which was actual used to treat Psoriasis and found to help some people with Alopecia) worked for me and my hair would grow back 100% which is unusual for any AA treatment. The problem would be that you have to go like three times a week for three to six months and Insurance would not want to pay for it and just paying the co pay gets expensive plus the drug you have to take along with the treatments, but I would fight the insurance company until they would pay and go through the treatments. Afterwards my hair would come back and I would be as happy as a student seeing a substitute on test day… but of course there is not a cure and as soon as I stopped the treatments it would begin to fall out all over again. On the up side it would take years and at first it would just be a little spot and then a couple more spots after three or four years I would have to wear a hat and then after about six or seven years I would take the treatment all over again. Of course that would mean going through all of the stress of it falling out again which we all can relate to.
(Just a side story I have had the same vacuum cleaner forever. I mean it was so old it was a Montgomery Ward Vacuum and they haven’t been in business for years, but anyway I finally bought a new one and they have come so far in technology and have so much more power that when I finally used it at my house, that I have owned for ten years, the first pass of the first room I had a bowling ball size hair ball in the canister…uhhh. After my hair falling out and growing back over and over again Im still getting hair balls, thank God I don’t have a cat!)
But anyway to make a short story long do I take the PUVA and go back to being “NORMAL” for a while or do I just start getting used to this is who I am? Think about it if it were you! I know it is only for so many years, but no hat, no wigs, no tats. Just your hair blowing in the wind baby!!! I know some people on here are totally comfortable going bald and loving it, but Im not one of them yet and also I think it is easier if you are already married or have a mate. I have so much more confidents in myself with hair.
Well thanks for your time and I just wanted to know what you would do if you had that chance?
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Comment by clare majka on December 12, 2010 at 8:46pm
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Hi Devin i can totally relate to not wanting to go bald but the thing is for me i lost nearly all of my hair in 6 months it was and is devastating, however there comes a time when you have to just accept what is going on and trying to make the most of it.It sounds like you are single believe me hair on a man does not matter as much as men think it does to women.Im 46 married and am trying to just get through it a day at a time.Do what makes you feel good but ultimatley you will only be at peace when you work on the inside first. I WISH LOTS OF LOVE AND LUCK FOR YOU CLARE.
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Comment by Devin on December 12, 2010 at 9:08pm
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Hi Clare I know what you mean about just accepting and trying to make the most of it, but I can walk amongst the hairy for a few years and not have to worry about it for one day, like a vacation from Alopecia...but you’re probably right. Although you didnt answer my question would you do it? I guess it sounds like you would pass. Well thanks for your positive words!
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Comment by Heather L on December 12, 2010 at 10:58pm
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Hey Devin,
If it were me... the first question I would have is- what are the possible negative side effects? If the side effects are all "superficial" and not harmful to my overall heath and I had a positive experience before.... Then I would do it in a heartbeat. The insurance/money stuff although a pain would never interfere with my plans.
One little concern I do have .... is you are assuming that doing the PUVA this time will have the same results as the last time. In my experience nothing about AA is that consistent or predicable. Would that stop me... no. BUT I don't think I'd put all my hopes in one basket. :)
A vacation from alopecia... sign me up!!! I understand how you feel about not being able to fully accept it! I'm there with you... am not even sure I want to ever accept it 100%... just wanna fix it! :)!
I don't know if you would laugh or cry if you saw the list of all the things I have tried over the many years to attempt to get rid of AA in my life... but I don't regret it. I think I'd regret more not trying and always wondering "what if"
Good luck with whatever you decide!!
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Comment by JeffreySF on December 12, 2010 at 11:13pm
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Hi Devin,
If you want it go for it... Just Do It!!!
If it worked for you maybe it will again.
You have to do what feels best for you!
Best Wishes!!!
Jeffrey
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Comment by Bald and Fabulous AKA Terri on December 12, 2010 at 11:33pm
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Hi Devin
I too did PUVA with the meds for 10 years!!!! Every week. Thankfully I live in Canada and my health care paid for it all, aswell as the injections. Im so shocked and disappointed in American health care when it comes to these types of things. Its not like it cosmetic surgery or anything (we dont chose this!!!)
Anyways with the shaving decision, I would just do it. (LOL actually thats what I did do) I didnt think I would ever have the courage and I was so wanting to keep my hair with the hope that the rest would grow. But in the short months that it has been since I decided to shave I have found that Im ok with it. In fact Im better than ok with it. I do miss the PUVA some, I found in this dry climate, especially this winter that my excema has cropped up again. LOL
Best of Luck with whatever you decide and keep us posted :)
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Thanks everybody for the positive feedback. I didn't just try PUVA once though, I've taken it at least 3 separate times over the last 20 years and each time my hair grew back 100%. The main side affect Heather is that with any UV rays it can cause cancer and that is why they dont do this treatment that much here anymore and with every treatment I've ever heard of your only postponing the inevitable, but I still would like a vacation. Thanks again guys!!!
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Comment by Lee on December 13, 2010 at 3:25am
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I tried PUVA and it didnt work for me. If it did, I would continue to do it. But that is 100% up to you. The only thing that has worked for me is steroids, and if I move back to NY and see the Dr the gave them to me, I would consider doing it again. The skin cancer thing I could see being a concern...seems there are no treatments without side effects yet.
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also...coming from someone that has tried every treatment in the book with not a lot of success. If you can have your hair through treatments, keep it and enjoy it as long as you can!
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Comment by zeida on December 13, 2010 at 8:23am
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I would do it. I am getting the painful shots in my head, because I want my hair back. I am giving it to February, if I don't see new hair I am shaving it off. My husband is behind me 100%. Good luck
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The steriods never worked for me. Sorry you haven't had much success Lee and I hope the shots work for you Zeida it sucks to go through all that for nothing. Thanks to both of you!
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