Update on PUVA

[JillyBean]

Hello all,

I don't get much time to read and post lately but I wanted to write an update of my pppp saga.

I started PUVA 11 weeks ago. I have had 22 light treatments for my hands and feet. So far, I am pretty disappointed with the results. My feet still look terrible. They are very red and always peeling. The only positive thing I have noticed is that I seem to flare less often and it is much less painful when I do flare, not as many bumps (dovonex keeps most of the putules away and now I just get bumps that peel), and it doesn't last as long. Overall, my feet and hands hurt slightly less than they did before.

I will continue doing the light treatments twice a week and am gradually increasing my time under the lights, I'm up to 2.5 minutes. I am hopeful that I will see some improvement. I truly don't know what I'll do if this doesn't help, it's my last resort so here's hoping it will work!

Thanks for listening! Any support, encouragement, and advice would be most welcome as I'm a little sad about it all at the moment.

Jill

[RichJ]

hi jill,
i hope it will help you. i wish you the best

have a good night all

richard

[JillyBean]

Thank you very much, Rich. I appreciate it. I hope it will help me too and will keep you posted.

[rtpage]

Jilly,

I never write on these boards, but have to respond to you.

First, if you're only at 2.5 minutes after 22 treatments, your Dr. hasn't a clue what he/she's doing. I've been doing PUVA since I was 16 (I'm 41). While the dose (joules) is dependent on the machine energy and number of pills you're taking, you should be WAY over 2.5 minutes. That is ridiculous.

Second, you may want to consider 3 times per week (must be a day in between treatments).

PUVA was the only thing that ever worked for me (other than Amevive, which worked well last year). Don't give up on it yet - but maybe consider a doctor that is more aggressive. I've used 15 doctors and 10 machines over 25 years and after 22 treatments, on average, I'd be around 15 minutes in the booth.

Bob

[chaimFL]

Jill, I agree with Bob. I've never used PUVA, but my uncle did and he would get up to 15-20 mintues in no time. I think your doctor is adding time as if he was using a UVB machine.

[emarie]

I have been going for three times a week and am up to 5 minutes. I am almost clear of all lesions, all of which were horrible on front and back of legs front and back of arms, elbows, belly button, ears, lower back and upper back, butt, feet, etc. Really bad on scalp but phototherapy does not help scalp. I have been on Methotrexate for one month for scalp and it is starting to clear. Get doc to boost number of treatments a week and dosage - gradually. Also, real clearing came after I started taking MTX at same time, and stopped putting gels, lotions or creams on lesions.

Hope this helps. I wish you well.