Re: to expose or not expose

[Guest guest]

Pat -- it is amazing how a bit of info to one member, can answer a question

that another member might have. I'm curious about PUVA, too, as I may be

headed for it, if my HMO approves it to the Derm. He told me it would start

out 3 or 4 times per week, and I could wear my " underwear " only during the

treatments. He didn't tell me how long I would be standing, though. I also

have early Parkinson's disease and sometimes it is difficult to stand very

long because of my balance. Do you know? Thanks, Bunny

Moderator note:I don't know. I've been to the Psoriasis Center of the South in

Atlanta GA and taken a tour of the facilities. Shower rooms and trays for hands

etc.. Never had a treatment though. Anyone else actually gone for treatments?

Pat B

[Guest guest]

I had PUVA treatments for over 3 years... It was one of those with the light

only on one side. The longest I ever had to stand was about 20 minutes (five

minutes for each side) and took about two years to work up to. It helped

when I first started but the medicine made me really sick and my eyes hurt.

MELISSA

[Guest guest]

Hi!

I am new to the list - my name is Ada. I live in the Atlanta area but I

have not been to the Atlanta Psoriasis center. However, I have had two

series of PUVA treatments (1995, 1999) and see my derm tomorrow about

starting a third. Right now it is the only thing that seems to work for me.

Last summer I had lesions covering the front of both legs and a good bit of

my lower arms - in addition to isoated spots all over! In 15 treatments I

was clear. The hard part is nausea I got from the psoralen pills. However,

ginger snaps and juice taken with the pills helped a great deal with that.

I am also on lodine and 10 mg of methotrexate for PA. This level of

methotrexate did not help keep my skin clear as lesions have reappeared.

Not quite as bad as last summer, but getting there. I was concerned about

too much light exposure, but with my skin clearing with only a few

treatments - it is worth it for now. After my light treatments - it seemed

my joints felt better too. Has anyone else noticed that?

Peace and blessings! And thanks to all of you for making this list happen.

I finally don't feel so alone!

Ada

Re: [ ] to expose or not expose

From: bunnydpw@...

Pat -- it is amazing how a bit of info to one member, can answer a question

that another member might have. I'm curious about PUVA, too, as I may be

headed for it, if my HMO approves it to the Derm. He told me it would start

out 3 or 4 times per week, and I could wear my " underwear " only during the

treatments. He didn't tell me how long I would be standing, though. I also

have early Parkinson's disease and sometimes it is difficult to stand very

long because of my balance. Do you know? Thanks, Bunny

Moderator note:I don't know. I've been to the Psoriasis Center of the South

in Atlanta GA and taken a tour of the facilities. Shower rooms and trays for

hands etc.. Never had a treatment though. Anyone else actually gone for

treatments? Pat B

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[Guest guest]

Hello everyone,

I am currently getting PU VA treatments. It is the same idea as UVB, with a

light box and everything, just different type of bulbs! It is helping, so

far. Slowly but surely. The alternative since I cant seem to tolerate

MTX............

I currently get them twice a week, since Medicare pays and I co-pay.

LeAnn & Blossom

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator

www.heartbandits.com

[Guest guest]

I guess you could say I've been lucky enough to have undergone the PUVA/PUVB

treatment. It starts at a very low dose (I think I was in for about 25 or 30

seconds the first time). At the peek of my visits, I was in for 15 minutes.

Total duration of my visits was 6 weeks, everyday. Treatment was at a local

hospital and was only about 5 minutes from my work. Tried to go again last

month but was told that I don't have enough P for it yet (minimum is 17%, I

was only at 6%). The benefits of the treatment lasted about 1 year for me

but it can range from weeks, months or years.

The best part of it all is that you end up with an excellent tan for

virtually free.

Good luck.

.

>From: bunnydpw@...

>Reply- onelist

> onelist

>Subject: Re: [ ] to expose or not expose

>Date: Mon, 20 Mar 2000 19:45:26 EST

>

>Pat -- it is amazing how a bit of info to one member, can answer a question

>that another member might have. I'm curious about PUVA, too, as I may be

>headed for it, if my HMO approves it to the Derm. He told me it would

>start

>out 3 or 4 times per week, and I could wear my " underwear " only during the

>treatments. He didn't tell me how long I would be standing, though. I

>also

>have early Parkinson's disease and sometimes it is difficult to stand very

>long because of my balance. Do you know? Thanks, Bunny

>

>Moderator note:I don't know. I've been to the Psoriasis Center of the South

>in Atlanta GA and taken a tour of the facilities. Shower rooms and trays

>for hands etc.. Never had a treatment though. Anyone else actually gone for

>treatments? Pat B

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[Guest guest]

Dear Pat, Bunny etc

I have had PUVA treatment here in the UK and in France whilst i lived there

and it does work for me with one drawback, once I stop back comes the P!

The treatment means going to a hospital/clinic with the correct equipment,

starting off with a low exposure/time then building up as you become more

accustomed...

France was very good as there was little delay between commencing the course

but with the NHS in the UK there was a delay of 6 months, try telling

someone with P, just keep on flaking the skin for 6 months and then we will

see you. I asked on completion of my course to continue but was told I would

have to wait another 6 months, yes you guessed it in 6 months time my P

would be back as bad.

The side effects of PUVA: I had an excellent derm who advised me that

whatever treatment you have there are side effects ( in the UK the treatment

is PUVA, mtx, creams or nothing), with PUVA there is the risk of skin cancer

but if you are careful and take precautions then this reduces, I will not go

into the side effects of MTX or other similar drugs, with severe P then

creams are out of the question, or you just try and live you life with the

P. I think that once you know and have researched the side effects then it

is up to the indvidual to discuss with your derm the treatment.

good luck to all and I would definite recommend a course of PUVA, even if it

means that your friends are jealous due to your tan in mid winter!!!

enjoy

______________________________________________________

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[Guest guest]

Hi -- That would be great if the side benefit was a good tan. But I

asked the doctor in a joking way if I would get a tan, and he laughed and

said no.....Is there a difference in the type of PUVA treatments?

I've been getting really wonderful responses from so many members. You'll

never know how much I appreciate your support and advice. Thanks, and Love

to you all, Bunny