Phototherepy question....

[twinieten]

I've been talking about switching derms, finding one that does NBUVB for awhile. I just haven't done it becuase it's, quite frankly, a PITA finding a decent derm. I'm not even impressed with the one we have now, but he's better than the other one I had the "privilage" of meeting. I've been through 2 derms, visited one more.... The PUVA doesnt' seem to be working, but maybe I haven't given it enough time.

Has anyone used one type of phototherepy with no success, and switch to another and have it work? How long has it taken to see improvment?

Backround: Gabe started PUVA in June of this year, June 19th was his first treatment, I think. He's had roughly 60 treatments since that time.

We had a setback, though. When we got our home unit, they didn't include the output specifications for our machine. National Biological, for some odd reason, doesn't think it's important to include this information with the unit, (at least the hand/foot unit). They just give an average output in the manual which is far lower than the actual output for our machine (they said 7.5 mw/cm2 but our machine is actually putting out 23 mw/cm2 for UVA).

So back to the setback... to be safe, I started Gabe at a very low time for treatment until I got the output specifications. I didn't want to burn him with too much exposure. He left the derm's office at 9 joules. When he started at home, he started at 3.5 joules. It was 4 weeks before we finally worked back up to 9 joules again.

While his feet cleared up by 8 joules and we've been working on weaning down to a maintenence dose, his hand is just not responding. Maybe it is, but just a little bit.

I think it's time. I need to call a derm nearby who does narrow band and see if we can't get in sometime before the turn of the century. I guess call a few who are further away too... since we don't need to be there 3 days a week, there's not a huge need to find one close, but close would be a plus!

Maybe NBUVB will work better. It'll certainly be easier, not having to deal with psoralen! I don't even know where to put it on his feet anymore! But I don't want to end up going backwards by switching treatments, and I'm afraid that might happen. <sigh>

[grannyfranny]

Drea,,,I had puva for 19 weeks,,,,3 a week. Never did help,,in fact, I got worse. By then, I had enough with lights and never had anymore.

[belldane]

Hi Drea,
I havn't done Puva but I have done uvb bb & nb. Started bb at derms and was almost clear at 8 min or so except for some small spots on knees,so derm ordered a unit for home, but we ordered the nb. While waiting for my unit I stopped going to derms and p started to come back but I wasn't too worried since I would be getting my unit soon. Well I got my nb unit and started up. When I got to 10 min and saw no improvement and my p spreading in fact I called the co. I thought maybe there was something wrong with the bulbs. They came out and looked over my unit and tested the output of the bulbs and everything looked good. I continued treatmeant and was up to 18min and close to 4000 jls!!!! All I had was a great tan and a lot of P! Well I talked to my derm and she said to try the bb again which I did and it started to work so I switched out my bulbs and bought bb.

Steve from Solarc Systems - www.solarcsystems.com was very helpful and gave me a lot of good info. Maybe you can call some of the light co's and ask them the same question about switching different types of light treatment. They may have had customers that have done that.

HTH Patty :)

[jbrickman]

i've been doing UVB(NB) for 7 treatments (3/week), and i've already started to see improvement. the plaques on my back are nearly gone.

-jbrickman

[partial]

I haven't tried UVB or NUVB yet, but have had a couple sessions at a regular tanning place and it seems to be working for me. The p on my palms and face is nearly gone after only two sessions of if, so I am hopeful that it, or NBUVB will work for me (it hasn't helped the p on the rest of me yet, but I am hoping it will)

I have a friend who has really bad p on his elbows and mustache area. PUVA did absolutely nothing or him, but real summer sun helped, so at least for him I would summise that there is some band in the spectrum that helps him out and it wasnt what they used in PUVA.

As a parent, I can say that the only thing worse than having this crap would be having a child who has to go through all this. Its frustrating enough to have it as an adult, and I can't imagine your frustration as a parent. My hat is off to you to for working on behalf of Gabe and keeping positive.

[twinieten]

Thanks everyone!

Granny.... hand p truley is the worst, ain't it? Why is it so stubborn?

Patty.... I'm glad to know that when one treatment failed, another one worked. Gives me hope! Thanks for the advice on bulbs. I talked to them about bulb swapping when they sent the wrong unit, and they pretty much made it sound like it's not possible. I don't know if that's true. At least I have a combo unit. I'd have gotten a triple combo unit if they made one! I wish I could just try NB on my own, but since I don't know how to use it, I have to visit a derm. PITA.

Jbrickman.... I've been following your progress, and I'm so happy for you! I can't wait to see your "before" and "after" shots. I hope you continue to keep up on your forum diary of your progress. It's great to be able to take this journey with you!

Partial..... I hope the phototherepy continues to work for you! It's good to know that your friend responded well to sunlight when PUVA didn't work, it's not impossible think that NB might work when PUVA doesn't seem to be making a difference. Thanks for the compliment! It's terribly frustrating, and I wish I could trade with him. It would be far easier for me to deal with it. The disease is bad, the treatment is annoying... you just can't win! He's sick of it, I'm sick of it.... if it were me, then at least he wouldn't have to deal with it to the same extent.