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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 Marianne Horvath on January 23, 2011 at 11:07pm
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Hi All,
I was told about the PUVA treatment , already have had 3 rounds of cortisone shots in scalp, not fun! Extra strenght Rogain for $45 which I used for awhile but than began to wonder about side effects? Almost a month ago I had a cortisone shot in the butt, never heard of that one before but it helps my psoroasis too. I was also told about Statins meds which I have got a prescript. but not filled yet. This is my second go round with AA about 90 percent of hair gone but not forgotten. Got 3 different wigs which people Love when I tell them and I thank God for my Husbands support too. It does not make it less painful just more cope-able. These Insurance Companies have to stop seeing this as a cosmetic issue and help us! I think it is so much more devistating and we have no warning. Thanks and Take care,
Marianne
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Comment by zeida on January 24, 2011 at 8:23am
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Hi Marianne I get the cortisone shots also (I know they hurt). I was also told to use the Rogain, but I started getting side effects from it and stopped using it. Like you I have three wigs and a very supportive husband and family. Hang in there it gets better. I have noticed that my hair is coming back. My eye brows are almost all in and my hair on the front is filling in. I still have large holes with no hair, but God willing I will be wig free soon. God bless.
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Comment by Libby on May 23, 2011 at 4:46pm
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Devin,
I just saw this post. Sorry for the late reply! I did the PUVA treatment on two seperate occasions. Once when I was 12-13 and the other when I was 17. My hair grew back briefly both times but then fell out quickly. I was advised by my Doctor not to continue PUVA because of the skin cancer risk. It has been 17 years since that last treatment and I have had 3 pre cancerous moles taken off of my head. So, to cut to the chase-I would advise against the PUVA treatment.
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Comment by Devin on May 26, 2011 at 7:59pm
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Thanks Libby, when mine would grow back I would be good for 6-7 years, but it doesnt matter you cant find the drug here anymore anyway. I hope your head stays cancer free.
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Devin,
I assume the drug you are referring to is Psoralen? When you did PUVA did you take the drug in pill form or did you apply it topically to your head? The reason I am asking this is because when I took the drug in pill form I would get so sick at my stomach. The drug would also emit a smell through the pores of my skin and I could still smell it coming from my skin on occasion years after I had completed treatment. I am wondering if this happend to others who have done PUVA. I hope you are doing well. Have a good and safe Memorial Day weekend!
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Yeah Libby I did this treatment about three times over the years and Ive done both, but I liked the pill form better. You have to eat before taking the pill or you would get sick, but I never noticed a smell, maybe everyone else did, no wonder no one would talk to me back then. I wish I could do it again because my hair would grow back 100% and take years to fall out. I guess those days are over for me.
I hope you are doing well. Take Care!
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