In home UVB treatments

[tsicard]

I have the good fortune, and an insightful doctor, to have recently received a perscription for an in home UVB phototherapy system. I have done the research and found that the best and most affordable option available to me through my insurance carrier in my state is the Panasol II unit. I will be ordering a 6 foot full body system and will be needing to use it for full body exposure front/back/sides/up/down (what a joy huh?.) Further research has given me contacts throughout the U.S. of folks who have units for sale. My question - I see a large amount of this same unit for sale by people and am wondering why they are getting rid of them. Is the fact that the panel of only 4- 6 bulbs is too limited for thsoe of us that need extensive topical exposure. Have you not had any success with this treatment or have you had negative experiences.
I see ther are som people who have more elaborate systems and wonder if the additional cost would be worth considering. I hate to think of arguing with the insurance compnay or even taking on unecessary additional debt if the panel is a viable option.

Your input would be greatly appreciated.

Additionally I would like to say thanks for the input, support and genuine concern I am seeing between members. There have been many days and nights that this disease has kept me from my life and I am finally just tired enough of it that I am going to take it by storm. Your comments, suggestions and well wishes have been instrumental in this decision for an otherwise silent sufferer.

[Fred1]

I purchased a panosol II recently (Jan 2002). I also noticed that there seems to be a fair amount available for sale or in some cases for free. I guess the only way to tell why people are getting rid of them is to call and ask.
After 31 treatments my skin is now clear and I am trying to work out a maintenance schedule. So far I like the equipment. Not as good (coverage is not as even)as the booth at the doctors office but better than traveling for treatment.
Good luck.

[sindy]

I also have the Panasol II. I recvd. mine in 1988/ From My Dermatologist @ Stanford Psoriasis Day Treatment.
thru my Insurance...Mine is for sale.,with a little bit of apprehensiveness in selling it!!
It is very dangerous. I wasn't too pleased with it. I got it right about the time that I kind of went into remission of sorts. It does beat driving to a Doc's office. My advice is, "Hey, if the insurance is gonna pay for it, get it.
I don't use mine becuz it is so powerful, and works unevenly on the body. Half the time I would burn my face, like an episode of I Love Lucy. Then I learned to drape a towel over my head..any part of your body that does not have p cannot be exposed to this light..per instructions.
I merely go to the tanning beds for 5-10 times to get clear, no burning, =no cancer......
I have had p for 30 yrs. I have guttate, w/tar, and I make my own scalp solution....:) Be very careful with your light box...remember to protect expecially your face..

I am very scared to sell mine...you could get sued if someone got hurt using it...WOW

[kwilton]

I also have just recently gotten the panisol ll for home use. My dem. wasn't useing it anymore because of the PUVA treatments. This requires uvb/uva. It works very well. For the last 2 rounds of treatment I went through PUVA is what I used. The uvb light was used at the office mainly by me several yaers ago. So, when they decided to get rid of it they gave it to me provided I made a donation to the national psoriasis foundation. Well here I am. The panels are not really less effective they just dont give you as even coverage as say the full bodied units. They still work provided you respond well to phototherapy. Some people don't. We all resond differently to different things. I wouldnt worry if you respond well to phototherapy you will respond to your light. Just remember to stay 6in. away from the panel. Also I use Balnetar therapeudic tar bath prior to doing my light treatment it makes you more suseptable to the light. You soak for 20min. It doesn't smell very good but it works great for me. Tina

[stametst]

I also have the Panasol II. I recvd. mine in 1988/ From My Dermatologist @ Stanford Psoriasis Day Treatment.
thru my Insurance...Mine is for sale.,with a little bit of apprehensiveness in selling it!!
It is very dangerous. I wasn't too pleased with it. I got it right about the time that I kind of went into remission of sorts. It does beat driving to a Doc's office. My advice is, "Hey, if the insurance is gonna pay for it, get it.
I don't use mine becuz it is so powerful, and works unevenly on the body. Half the time I would burn my face, like an episode of I Love Lucy. Then I learned to drape a towel over my head..any part of your body that does not have p cannot be exposed to this light..per instructions.
I merely go to the tanning beds for 5-10 times to get clear, no burning, =no cancer......
I have had p for 30 yrs. I have guttate, w/tar, and I make my own scalp solution....:) Be very careful with your light box...remember to protect expecially your face..

I am very scared to sell mine...you could get sued if someone got hurt using
it...WOW

Dear Sindy:

Please forgive for asking but if your equipment is considered dangerous why would you want to sell it to someone else? I wouldn't think selling it for money would be that important vs. someone getting seriously injured.

I am just wondering.

Have a blessed day.

[Resist]

I merely go to the tanning beds for 5-10 times to get clear, no burning, =no cancer.....Tanning beds use UVA for one thing, this has little effect on Psoriasis. You are incorrect in thinking you can't get skin cancer by using tanning beds, as you can still get burned from UVA.

[richb74]

I had a panosol two unit also. One winter I had a bad breakout and was desperate to try anything. After being treated by one derm he tried every cream and ointment and nothing seemed to work so I got his permission and bought the unit. After trying it for about a month I noticed some clearing but it was after finding a new derm and with the right treatment my skin finally cleared and I never went back to using it again. I just sold it last year.

Rich

[partial]

Tanning beds use UVA for one thing, this has little effect on Psoriasis. You are incorrect in thinking you can't get skin cancer by using tanning beds, as you can still get burned from UVA.


I agree that tanning beds can burn and increase the risk of skin cancer, however disagree strongly that UVA has little effect on psoriasis.

My first bout with psoriasis, probably about 50% covered with plaque, I had no other light treatment available due to where I was living. Tanning (done conservatively so that I would not burn) cleared it 100%. It sayed 100% clear for the summer, then started coming back.

I got a home NVUVB machine, and found it very slow to provide any relief. Since the psoriasis was in full flare mode again and I was sick of it, I went back to tanning since it was so easy to bump up time without the risk of burning.

This flare was far worse than my last and harder to deal with. Tanning/UVA has reduced it by about 80% to date.

I am not sure where you got your information that UVA does not work, but can say from personal experience that it has worked well for me. My derm also uses PUVA treatments on patients, particulary those with pustular psoriasis. I had a visit to him about two weeks ago and told him that I went back to tanning, his only comment was, "It really looks like the plaques that remain are breaking up well".

Resist, have you personally tried UVA, PUVA, or tanning to help with psoriasis? I have, and have had tremendous results.

While the disease seems to respond to different treatments very individually, I have found it a "treatment" that not only has allowed me complete control over "scheduling", but is quite relaxing, and so far has worked well for me.

I don't have any problem with people who have success with systemic or biologic drugs, and am glad to see that they have had good results, it is just not something that I would ever do because of side effects. I think people should explore all their options.

Your blanket statement about UVA, "this has little effect on Psoriasis", is in my opinion and experience incorrect, and without basis. I took a picture of one of my most stubborn plaques after about a week of tanning. I just took a picture of what it looks like today, you be the judge.



About a month or so ago, after going back to tanning for a week or so to deal with the latest flare. The plaqus are far improved at this point from where I started.
http://img153.imageshack.us/img153/3189/plaquethen1gs2.jpg (http://imageshack.us)


A few minutes ago, breaking up, not itching at all, very close to being cleared up, at 10 minutes in the tanning bed.
http://img524.imageshack.us/img524/593/plaquethenop5.jpg (http://imageshack.us)

Same spot on my right upper thigh that is one of the more stubborn area. I can put up a picture of my back (which was almost completely covered with plaques a month ago and is now completely clear) if need be.

It has worked well for me, I have factored in and thought about the potential side effects, and found it an inexpensive and effective way to deal with it (my first flare up I had insurance that was terrible and really had no other option. It worked then, it is working now).

[Resist]

Resist, have you personally tried UVA, PUVA, or tanning to help with psoriasis? I have, and have had tremendous results.No I haven't tried UVA for my Psoriasis but medically UVB has been proven to have the greatest effect on Psoriasis for most people. It's great that UVA is working, as you are in the minority.

Tanning if you think about it, is counter productive as it makes the UV rays harder to penetrate the skin. When the skin tans it is protecting (blocking) you from UV exposure. I am not sure but if I remember correctly tanning salons are not 100% UVA and have some percentage of UVB mixed in.

UVA can cause premature ageing of the skin while UVB can cause serious burns....what's a person to do.

[stametst]

I agree that tanning beds can burn and increase the risk of skin cancer, however disagree strongly that UVA has little effect on psoriasis.

My first bout with psoriasis, probably about 50% covered with plaque, I had no other light treatment available due to where I was living. Tanning (done conservatively so that I would not burn) cleared it 100%. It sayed 100% clear for the summer, then started coming back.

I got a home NVUVB machine, and found it very slow to provide any relief. Since the psoriasis was in full flare mode again and I was sick of it, I went back to tanning since it was so easy to bump up time without the risk of burning.

This flare was far worse than my last and harder to deal with. Tanning/UVA has reduced it by about 80% to date.

I am not sure where you got your information that UVA does not work, but can say from personal experience that it has worked well for me. My derm also uses PUVA treatments on patients, particulary those with pustular psoriasis. I had a visit to him about two weeks ago and told him that I went back to tanning, his only comment was, "It really looks like the plaques that remain are breaking up well".

Resist, have you personally tried UVA, PUVA, or tanning to help with psoriasis? I have, and have had tremendous results.

While the disease seems to respond to different treatments very individually, I have found it a "treatment" that not only has allowed me complete control over "scheduling", but is quite relaxing, and so far has worked well for me.

I don't have any problem with people who have success with systemic or biologic drugs, and am glad to see that they have had good results, it is just not something that I would ever do because of side effects. I think people should explore all their options.

Your blanket statement about UVA, "this has little effect on Psoriasis", is in my opinion and experience incorrect, and without basis. I took a picture of one of my most stubborn plaques after about a week of tanning. I just took a picture of what it looks like today, you be the judge.



About a month or so ago, after going back to tanning for a week or so to deal with the latest flare. The plaqus are far improved at this point from where I started.
http://img153.imageshack.us/img153/3189/plaquethen1gs2.jpg (http://imageshack.us)


A few minutes ago, breaking up, not itching at all, very close to being cleared up, at 10 minutes in the tanning bed.
http://img524.imageshack.us/img524/593/plaquethenop5.jpg (http://imageshack.us)

Same spot on my right upper thigh that is one of the more stubborn area. I can put up a picture of my back (which was almost completely covered with plaques a month ago and is now completely clear) if need be.

It has worked well for me, I have factored in and thought about the potential side effects, and found it an inexpensive and effective way to deal with it (my first flare up I had insurance that was terrible and really had no other option. It worked then, it is working now).


Hi Partial:

I am doing NBUVB light treatments at home and in my opinion whatever works for the person. I say go for it. If it gives relief whether it is UVA/UVB/Vitamins/Creams/Oatmeal Baths if it provides RELIEF THAN GO FOR IT.

Also, I would like to mention just because a person uses UVA or something different DOES NOT MAKE THAT PERSON WRONG/INCORRECT. UVA maybe best for you and UVB maybe best for me does not make things wrong. Everyone's skin is different and reacts differently. Doctor's cant categorize things like this, they learn from their books and their patients.

To make statements saying it does not effect on psoriasis I believe that is wrong. Especially if a person has not tried it or has not consulted with a doctor. Most people on this board I do believe are not doctors....there maybe a few and I am certain they can provide better information than some of us.

I went to Pennsylvania this weekend and found out more information on the treatment of psoriasis and some things that have been posted are not correct. I spoke to RN's who are licensed in skin disorders....work with dermatologist who I feel really know something about this disorder. They told me there are all sorts of treatments and many of them work and some do not. THERE IS NO GUARANTEE IN LIFE, GOD DID NOT MAKE THAT PROMISE.

THE UVA TREATMENT LOOKS LIKE IT REALLY HELPED WITH YOUR PSORIASIS. You and your doctor are doing something right. I try very hard not to conduct myself as a know-it-all type person. Also, I try to listen to other people & their ideas.

My last thing is DON'T TAKE HOPE AWAY FROM SOMEONE. What works for one person may not work for someone else. I hate this disease.

DOCTORS IF I AM INCORRECT IN MY STATEMENT PLEASE EMAIL ME.

[4wheeler]

i want to mention that i have been using both a tanning bed (12 min) and a 16nbbulb machine (8 min ) and i have to say at this point at the end of october my p is usually back in full force and i usually would be frustrated stop nbuvb (i seem to need a break from lights because they seem to stop working after a while i usually take a 2-3 month break and lights work again) but at this time my p is in pretty good shape. i know that both uva and uvb are helping me and besides i still have a really nice tan. what i think i'm trying to say is that a tan isnt hindering the effects that uvb can have. for me both uva and uvb are working and if you think about how much i said i spend at the beach(3-5) times a week for 3-4 hrs a day i get as much uva as i do uvb and my p always clears up in the summer(thank god). this fall was the first time i ever used a tanning salon because i'm going to panama in 2 weeks and i like to blend in with the locals( i speak fluent spanish and when im tan i can pass for latino instead of a gringo). mike

[Mourningdove]

I was given a Panasol II unit by a family whose mother had died. They had no idea what to do with it, so contacted the NPF who sent an email to me. I signed a waiver releasing them of any liability. So, that is how and why I got mine.

I also have a full body unit, a UVBiotek. Both units are fine and I have no complaints. I have the full body unit in my home where I live, and the panel in our other home where we stay for trips out of town.

The only advantage with the full body unit is that there may be more even coverage and treatment times are shorter since you can do all sides at once. In some ways, the panel is nice if you have a tendency to be claustrophobic. It is nice to stand in front of it in an open room and not enclose yourself. I would think this would be especially nice if you have long treatments.

I also have found that it is best to cover your face. I have also found other areas on my body that are "extra sensitive". I took big 4" wide strips of elastic and made wraps that go around my knees because the backs of my knees were getting burnt. I also wear white gloves because the backs of my hands were reacting. It takes awhile to learn your body and how it reacts and especially how it reacts when you are taking any medications that may make you even more light sensitive.

[chelsee]

I have had my UVB Panosol II since 1989 and my doctor mention upgrading to the Narrow Bands bulbs and just found out my system is not upgradable. So I will probably be looking for a new home for old system when I get my new narrowband system. I don't use my lights all the time but it does help during a flare up.

[stametst]

I have had my UVB Panosol II since 1989 and my doctor mention upgrading to the Narrow Bands bulbs and just found out my system is not upgradable. So I will probably be looking for a new home for old system when I get my new narrowband system. I don't use my lights all the time but it does help during a flare up.


Be sure to look on the board for equipment for sale or equipment that is being given away. One thing I would like to mention to you, is to ask questions before you fork out a lot of money for a machine. Make a list of questions. I am also including some website if you want to look at buying a new machine. Here goes..........www.daavlin.com, www.uvbiotek, www.nationalbiological.com. National Biological some machines may require a code from your dermatologist, not a big deal. You can always get the code from your dermatologist and if you do not wish to be bothered with that type of machine you can look at others. All three of these companies are really good and answered my questions...very customer service oriented!

I bought a Daavlin 7 Series machine from a member of this board. He was very thoughtful and showed me how to work my machine. He also made certain that I had the manuals, paperwork, goggles etc. I am very grateful to him. As I said, ask questions about any piece of equipment that you will be forking out some money.

[RichJ]

hi chelsee,
welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard

[ben smith]

Hello all! I am looking for a used UVB light box. I tried to run this through Tricare (military insurance) and they denied it as an un proven treatment, so I now have to appeal it. I am looking for an alternative means. if anyone has a Light box, panasol II or similar for sale, please let me know.
Ben Smith
816-956-1202
benjamin.L.smith@hotmail.com

[kansasanne42]

I have an almost new panosol II 6' 4 bulb panel that works great. I am selling this for a friend as part of her deceased father's estate sale. The panel is located in the Ann Arbor, Michigan area. Selling for under $900. If interested, please email me at kansas_anne@yahoo.com.

[RichJ]

hi kansasanne42
welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard

[spotcheck]

hello all
- i have done a bunch of posts here, but i also bought a 6' unit years ago... it was great for 4-5 years with my guttate p. i had a big flare this aug. my home unit was just not powerful enough to do the job. so, i am going to my hospital (mass general) in boston. today i was in there for 4 minutes after my 18th visit. my p. is going into remission i believe. the woman in charge told me that my home unit, and the 'phone booth' i was in today were totally differnt. what i DID find out, is the 6 booths at the hospital are not the same... they all look alike, they all seem identical, but they put some type of 'device' in each booth every week, and measure the 'strength' of the output of each booth. - so, today as i was at 4:05 minutes in booth 'A' in booth 'F' it might have been 3 minutes and 20 seconds.

so, as i had this 'big' breakout 2 months ago, my derm told me he wanted me to come to the hospital for treatment for 30 times. i will see him in 2 weeks and see what he says. - bulb replacement, is an issue i have learned, as they must lose their strength over time. consequentially, i think units are for sale for a reason... maybe the person who owned it had to go to systemics, or biologics and is getting the results they need. - i would ask the date of 'the unit' and the amt of treatments it has administered.

[Alarbman]

I agree that "UVA" does work well on Gutatte P. I have used it forever. It keeps me 80% clear. The best clearing I ever had was when I used a combo booth: It had both UVB bulbs and UVA bulbs. Unfortunately, these are now allmost impossible to find. So I have been forced to use the UVA only units. But they work almost as good. My maintance schedule is once a week, 15 to 20 minutes.:) I came down with severe guttate P at 7 years old.:mad: