Psoriasis - Anyone used PUVA?

[Princess.Neve]

While I know this isn't a medical forum, I just had to ask my DIS friends for some advice. I've had psoriasis for 6 years now and have never been able to get it under control. I've tried the creams, the ointments, the liquids, steroid injections to the site, and lastly, Enbrel. I cannot take Enbrel due to horrible side-effects and nothing else works.

My dermatologist has now recommended PUVA, light therapy. I'm very fair skinned and do not tan, but simply burn. I've been trying to read up on it, but nothing is the same as first hand experiences.

Would anyone recommend this? I guess I'm just a bit scared as I've no idea what to expect. I've never been to a tanning salon either although I've heard it is comparable. So, do you have any thoughts to put a nervous mind at ease?

Thanks!

 

[lisajl]

While I have not done that, it was recommended to me.
My last hope before that was a Hydro-40 medication. (looks like mousse)
It cleared up my problem. Now, if I remember correctly, the doctor told me that there could be darker skin issues with the light therapy. That is, where the light therapy was aimed, it would become darker over time.
I am a redhead with VERY light skin! So, thankfully, the Hyrdo-40 worked.
Good luck!

 

[Tinijocaro]

Don't have psoriasis but dad and sis and niece do. Sis and niece have both tried taking cod liver oil (must do it for 8 weeks to see improvement) but it helped them immensely. Often, psoriasis is caused by omega 3 deficiency.

dd was 4 and had HORRIBLE eczema. I put her on cod liver oil and in 6 weeks saw improvement, by 8 weeks it was gone. Gone. We had also tried everything available-steroids, baths, special lotions.....none of it cured her eczema, only masked her symptoms.

No side effects, omega 3's are really good for us. Worth a try.

 

[scjo68]

My SIL does PUVA treatments. She says it helps her so much. She had been to so many Drs. and tried so many things, nothing else worked. But this does.

She has it done at the drs. office, insurance covers it. In fact, she said her insurance may cover part of the purchase of one (machine) for herself so she doesn't keep having to travel to the Drs. office- it's kind of a hike.

But she likes the fact that each time she has a treatment, the Dr. checks her skin- there is a chance of developing skin cancer, like with the real sun or tanning bed. But to her the risk is worth it, it has freed her from terrible Psoriasis that was affecting her life.

 

[Princess.Neve]

Thank you for your quick responses. I'm only 19, so doing something that may cause problems later on in life does give some pause for thought.

I've tried taking omega-3 supplements before, as well as other 'natural' or 'dietary' changes, but they never seemed to work for me.

 

[disfan07]

I dont have psoriasis but I have severe eczema that is basically being treated like psoriasis.

I tried all ointments and creams but I am allergic to most of them (I am allergic to parabens and lanolin)
They tried PUVA but after 2 sessions I burned so they decided to stop.
Now, I take methotrexate (an immunosupporesent--used in higher doeses for chemo) adn its the only thing that has worked.

My advice is to try the PUVA...if you burn afe rthe first time, they will lower the strength and/or the time you spend in there. If you still burn after they lower it, than they will just stop the treatments. I burn just from being outside for 15 minutes WITH sunscreen on. The sunburn that is possible from PUVA is very very mild. My doctor told me that its nothing that is really going to cause any problems later on.

 

[roliepolieoliefan]

I've had psoriasis for about 30 years now. It developed early in life. I have probably had about every kind of treatment including PUVA.

PUVA didn't work that well for me. I had TO GO 3 x a week to what looked like a large stand up tanning bed. It was adjusted each time I went and the time was increased as I tolerated it.

My skin tans fairly easy so I never had a problem burning. And if you do burn its not like a horrible sunburn. it stings for a day, you usually skip a day, then your time will be readjusted.

I take Enbrel now and have for about 3 years So far so good, but some does reapear every now and then.

Just be real careful with your treatments. My childhood dermatologists was very cautious with my treatments when I was younger. He explained to me alot of the medicines are not fully tested on pregnant woman or what side effects they have later in life. My doc was VERY conservative until after I had my children and my OB and derm. would not let me go near any psoriasis medicine during my pregnancies.

Good luck! There is a message board for psoriasis, have u been on it? Maybe someone on there would have suggestions.

 

[Pooh Crew]

What is the recommended dosage of cod liver oil supplements? My mom has terrible psoriasis, too. Her insurance won't cover the injectible medications and I'd love to share some alternatives with her.

 

[MizTink]

What is the recommended dosage of cod liver oil supplements? My mom has terrible psoriasis, too. Her insurance won't cover the injectible medications and I'd love to share some alternatives with her.

this is what i need to know too......

 

[GrillasGirl]

Not sure what PUVA is (I am in England) but....

Although I have a very mild case only I found that cutting out all SLS and other 'soap' products helped and made things far more manageable with my usual creams.

 

[DawnCt1]

I have psoriasis only on my feet. I did PUVA three times a week, and except for the inconvenience of going, I got very good results. I did not take the psoralin (the drug that makes one photosensitive) orally, but soaked my feet in 2 capsules of psoralin in 2 liters of water and then gradually increased the exposure to Ultraviolet A. Other treatments I have used have been tazorac and dovonex. (spelling). I finally bought my own UVA light box and did the treatments at home. While not as good as what the dermatologist offers, with consistency, I did get my skin clear. The light box cost less than $130 so that was only equal to a few "copays". I think it is worth the effort to do it. I have never tried embrel due to the serious warniings on the label and the fact that my psoriasis is limited to a small, specific area. . I try to avoid taking anything systemic. Also, I have found that if I get an infection, my psoriasis gets worse. Just scrubbing with and leaving on Phisohex for two minutes, resulted in a very good improvement as well. Good luck. I would opt for PUVA before any systemic drug.

 

[The Princess]

What is PUVA? My dd who is 14 has it real bad in her scalp. She hates to put the medication on (it doesn't work to well anyways) she says it makes her hair look greasy. I feel bad for her not only because it is itchy but she has dark hair.

 

[DawnCt1]

What is PUVA? My dd who is 14 has it real bad in her scalp. She hates to put the medication on (it doesn't work to well anyways) she says it makes her hair look greasy. I feel bad for her not only because it is itchy but she has dark hair.

There is a drug called psoralin that makes one "photosensitive" and attracts the Ultra violet A rays below the skin surface. "P" stands for psoralyn, UVA is the light wave. I don't know how it works in hair. One can either take the drug orally, which would make them photosensitive all over, or soak the affected area in psoralyn and expose it to the UVA light.

 

[Tinijocaro]

What is the recommended dosage of cod liver oil supplements? My mom has terrible psoriasis, too. Her insurance won't cover the injectible medications and I'd love to share some alternatives with her.

Not sure, this was a few years ago that dd took this. Here are some links to show the link between omega 3's and psoriasis.

http://www.ehow.com/way_5291319_natural-cures-psoriasis-scalp.html

http://www.ehow.com/way_5291319_natural-cures-psoriasis-scalp.html

http://en.allexperts.com/q/Choosing-Alternative-Therapies-3406/PSORIASIS.htm

http://www.doctoryourself.com/psoriasis.html

 

[HelenePA]

to the person who gave their child cod liver do they make small sized pills? I have some omega 3's I wanted to try with my dd but No way could she swallow them.. she CAN swallow pills but the ones I have are like horse sized.. what brand do you use? My dd has it on her scalp and stomach area.. its really awful around her belly button

 

[Tinijocaro]

to the person who gave their child cod liver do they make small sized pills? I have some omega 3's I wanted to try with my dd but No way could she swallow them.. she CAN swallow pills but the ones I have are like horse sized.. what brand do you use? My dd has it on her scalp and stomach area.. its really awful around her belly button

I used the Carlson's Cod liver oil-straight up, no pills. DD loved it at the time-lemon flavored. I think they have orange too. She tried it again recently and hated it so I gave her the capsules. She likes to suck on them till they pop, then just swallows the oil.

 

[HelenePA]

I used the Carlson's Cod liver oil-straight up, no pills. DD loved it at the time-lemon flavored. I think they have orange too. She tried it again recently and hated it so I gave her the capsules. She likes to suck on them till they pop, then just swallows the oil.

Oh my.. I know she wont suck on it and just swallow it.. I didn't know they had liquid you could buy.. Where do you buy it at? We'll try anything.. the gave us a prescription for a shampoo but it was 92$ after insurance We are looking for a new dermatologist because he wasn't willing to try anything cheaper before we went for the expensive stuff!

 

[Princess.Neve]

Wow, I never imagined so many people would be familiar with this. As a response about psoriasis on the scalp, if it is hidden and underneath her hair, PUVA will not work. I have psoriasis covering my entire scalp and the doctor told me that unless I wanted to shave my hair, the treatment would not target that area. For me, that was not a problem because it is not my scalp that bothers me but my forehead, nose, ear lobes, etc.

 

[HelenePA]

Wow, I never imagined so many people would be familiar with this. As a response about psoriasis on the scalp, if it is hidden and underneath her hair, PUVA will not work. I have psoriasis covering my entire scalp and the doctor told me that unless I wanted to shave my hair, the treatment would not target that area. For me, that was not a problem because it is not my scalp that bothers me but my forehead, nose, ear lobes, etc.

my dd had it really bad around her ears right now its cleared up so had her scalp again I'm so sorry your going thru this too.. its awful

 

[Tinijocaro]

For the scalp issue, I read that vinegar really helps, google it as I'm not sure what you do with it exactly.