I got my DS7 in to see a dermatologist last week who does the light therepy. We'll be starting PUVA in another week or two. I'm waiting it out for 2 reasons. One, because it'll be a 3 day a week ordeal, I'd like to wait until school lets out for the summer. The office is a good 45 minutes away from school/home, and with my other son's school schedule, DS7 would end up missing far too much school. Two, I'm trying this stuff called Isotonix OPC-3, a loading dose, for the next 7 days and I'd like to see if it works before going in to this PUVA therepy which has it's risks. Then there's the cost. I'm lucky that my insurence will cover the treatment at $15 per visit, but 3 copays a week and the added travel and gas useage, it'll really add up quickly.
As for the risks of PUVA (we'll be usng topical psoralin) I know that the risk of development of skin cancer is there. I have read that continued exposure can lead to cancer, but with the PUVA, clearing or remission without maintenence exposure is possible for months or even over a year. That would be the best possible outcome! But being a boy, he may need maintenence exposure becuase he likes to do things like climb trees and the monkey bars at school. :) His backround, being 50% Mexican and 25% Romanian, his risk of developing skin cancer and burning are reduced, so the doctor said.
Someone told me that her sweat glands were damaged after she was treated with PUVA. I'm not finding any information about this on the internet. Has anyone heard of this before and does anyone have a link?
I'm also wondering if UVB would be a better option for us. The risk of skin cancer development isn't there. Plus we wont' have to use the psoralin, and there is also the possibility that it if it works, we could see about getting a home unit and eliminate the travel and copays. It's less effective and remission is less likely without continued maintenence, but if I'm wondering if I should try the less risky treatment first. If it works, great! If it doesn't, then we can go with PUVA.
Drea n AZ

Greetings Drea,
Ask your derm about NBUVB (Narrow Band UVB). NBUVB doesn’t use the UV wave lengths that are associated with cancers and one won’t be taking Psoralin either. It knocked out my very stubborn case of p. in a very short time (I’m 100% clear). Because it is fairly new to us it doesn’t have the 80 year track record of UVB but doctors are confident with it’s safety and it’s becoming more popular as it’s high success rate is being established.
I suffer from a severe case of plaque psoriasis and I used PUVA years ago and it worked as well as one could hope for (100% clearing) but with the better choices of today I wouldn’t use it now and my derms. at my HMO Kaiser will no longer prescribe it because of the cancer risk and the problems associated with Psoralin. Psoralin side-effects were just nasty for me and combined with PUVA it can really tax your body. Other than the time it takes to go to your light treatments, NBUVB is a piece of cake.
Ask and perhaps you shall receive.
James K.

Hi Drea,
My daughter Ansley had a severe case of plaque and guttate psoriasis and it's clearing up very nicely with narrowband UVB. Her doctor used to offer PUVA but doesn't use it at all anymore, so I'm sorry, I don't know anything about it. At some point, they went to UVB broadband and just a couple months ago switched to narrowband.
She is a fair redhead, and has had no burning and minimal discomfort with the narrowband, so I highly recommend trying it. We are lucky in that it's only a quick 5-minute drive away, but the costs are really adding up. Because of that, I'm certain we'll be looking at a home unit in the future.
I hope you can try the UVB narrowband. Good luck,
Katy

That's good to hear! I think I mentioned that if I go with UVB narrow or broad, not only do I think it might be a safer route, it allows me the option of receiving a home unit in the future. I called the dermatologist this morning and the only UVB unit that he has is a full body, and he doesn't do narrow band UVB. So I'm looking for a derm that does the UVB but it might mean a furter trip. I'm just cringing at the thought of the gas money to get there and back!! Yikes!! I'll let you know how it goes!
Hi Drea,
My daughter Ansley had a severe case of plaque and guttate psoriasis and it's clearing up very nicely with narrowband UVB. Her doctor used to offer PUVA but doesn't use it at all anymore, so I'm sorry, I don't know anything about it. At some point, they went to UVB broadband and just a couple months ago switched to narrowband.
She is a fair redhead, and has had no burning and minimal discomfort with the narrowband, so I highly recommend trying it. We are lucky in that it's only a quick 5-minute drive away, but the costs are really adding up. Because of that, I'm certain we'll be looking at a home unit in the future.
I hope you can try the UVB narrowband. Good luck,
Katy

Drea, I did PUVA for 4 months last summer. It seemed to help a little, but I was in a awful flare at the time. Just be sure to use sunscreen on the areas that dont have P, for me it was the ankles and wrists. If your doing feet and hands, take along a pair of tube socks with the feet cut out to put on your arms. I hope it helps you out.
Patty

Thanks for the advice. This is for my son who is 7. I was thinkng about using sun screen on unaffected areas, but I wasn't sure if it would be necessary. I think I read that UVA doesn't penetrate the skin without the meds.... I can't remember. I'm suffering from information overload. :) I'm trying to find a dermatologist that is located a reasonable distance to my home who does UVB. If that doesn't work, then I can try PUVA.
Drea, I did PUVA for 4 months last summer. It seemed to help a little, but I was in a awful flare at the time. Just be sure to use sunscreen on the areas that dont have P, for me it was the ankles and wrists. If your doing feet and hands, take along a pair of tube socks with the feet cut out to put on your arms. I hope it helps you out.
Patty

It does affect the P free areas. My angles were black for months. When it starts to peel it just looks like you didnt wash them. Good Luck with your sweetie.

Greetings Drea,
Ask your derm about NBUVB (Narrow Band UVB). NBUVB doesn’t use the UV wave lengths that are associated with cancers and one won’t be taking Psoralin either. It knocked out my very stubborn case of p. in a very short time (I’m 100% clear). Because it is fairly new to us it doesn’t have the 80 year track record of UVB but doctors are confident with it’s safety and it’s becoming more popular as it’s high success rate is being established.
I suffer from a severe case of plaque psoriasis and I used PUVA years ago and it worked as well as one could hope for (100% clearing) but with the better choices of today I wouldn’t use it now and my derms. at my HMO Kaiser will no longer prescribe it because of the cancer risk and the problems associated with Psoralin. Psoralin side-effects were just nasty for me and combined with PUVA it can really tax your body. Other than the time it takes to go to your light treatments, NBUVB is a piece of cake.
Ask and perhaps you shall receive.
James K.
I was going to say the same thing. Try for a Doc that has narrow band UVB. You might even find one closer then the 45 minutes it takes to drive to the current Doc.
Good luck and keep us posted.

I was going to say the same thing. Try for a Doc that has narrow band UVB. You might even find one closer then the 45 minutes it takes to drive to the current Doc.
Good luck and keep us posted.
AHHHHHHHHHHHHHHHH!!!
I'M TRYING!!!!
It's terribly frustrating! I just spent the last hour on the phone calling various dermatologists even seeing if one would write a prescription without actually doing it first. Fat chance!
So today these are my options:
- 50 miles away, does NBUVB
- 5 miles away, does NBUVB but no appointments until August
- 15 miles away, only does PUVA. I asked if they'd get a NBUVB unit for me and keep in the office. If it worked, I'd take it home. They said 'no'. LOL!!
So I started down the list of derms in my network and found no one who did UVB narrow or broad, or they have stopped taking phone calls for the day. So I guess I start again tomorrow, first thing in the morning, see what I can find. I think time and gas, the 50 mile one is just out of the question. That's 100 miles round trip and that would be 3 days a week I assume.
What would you do if you were me?
The lady at the PUVA derm doesn't understand why I'm so concerned about PUVA and thinks I'm overreacting. I told the lady about the higher risk of skin cancer. She said she's never seen it in her 10 years. I told her about the woman who's ankles turned black (bratsareus) and about a woman on another group who's sweat glands were destroyed by the PUVA. She says "wow, those are very extreme cases. Where are you getting your information?" Well my yahoo p grups and NPF forums, of course!! <VBG> Where else?
I think if I can't find someone who does the NBUVB tomorrow, someone nearby, I'll just go with the PUVA so I can get started on it. His hands are just not clearing up. I hoped beyond hope that the Isotonix OPC-3 would do the trick, but it's been almost a week since we've done the loading dose, and it's been a month since we started it, and I'm just not seeing any improvement. If I was seeing a little bit of improvement, I could stick with it a little longer before trying phototherepy, but there is no reason to now.
Here's something funny. One of the receptionists told me I should just have him sit out in the sun. I started laughing. She didn't know why. I pointed out that he'd have to lay on the ground with his hand and feet up facing the sun. That'll work! LOL! Besides, we had a pool last year in the backyard and he was in the sun every day with no improvement.
What to do, what to do.....
Drea in AZ

hey well im 14 yrs of age nw and hav had psoriasis on my hands and feet for as long as i can remember. it has effected my life dramatically as in i cant walk more than a couple of metres on a bad day when it is flared up! i hav had to giv up my sports and my hobbies because of this and i loved my baton twirling but i am no longer able to go, i had a chance of competeing in baton twirling for my country which is what every twirler dreams of but becuz of p i fullfill my dream. i hav had various treatments for this 1 of them being PUVA light treatment, This caused me to have 1 burn on my hand where the suncream was supposed 2 b covering! they giv you these sleeve things to put on arms and legs and suncream the other places on show that are not effected by psoriasis. This PUVA treatment helped me in the slightest way, it cleared it up enough for me to be able to walk distances. i hav had accupuncture to try and clear it and the herbal tea from dr china. and nun of these hav worked but i found that dermovate and a gd moisturiser such as double base under gloves or clingfilm is gd 4 clearing it up . try that 4 10 days and then move on to diprosalic under closure with moisturiser 4 a wile.it makes a hell of a difference.Anuva gd moisturiser is EUMOBASE u can get a free sample at www.skinflare-up.com
hope this info helps you on your way to lookin for a cure
xxXxx Stace(lemunki) xxXxx