Uvb Phototherapy at home? Long term treatment?

[SquidBro]

Ive not been active here for a long time. I started Uvb treatment back in March i believe.

It was great. Within probably 2 or 3 months i was nearly clear (90+%) after having bad 90%+ coverage with horrible scales. I had a few flares here and there but the treatment would zap the new psoriasis fast. I was doping 3 treatments a week. A few months ago now my doc dropped me to once a week and since then the PSO has been growing and growing again. Cold weather in Canada doesnt help.

The derm wants to take me off it. She says its not wise to keep me on it long term due to risk of cancer. But i won't go on meds and since getting a taste of clear skin im seriously considering getting my own home unit and using it conservatively. No more than 3 times a week, very short period, like a minute per side. Being careful to avoid any burning or skin irritation.

Admittedly i am a little distrustful of the derm, shes nice but shes very pharmaceutical focused and personally i dont trust and wont touch the stuff. When i started the phototherapy she told me they have 30+ years of data on UVB and that its safe, effective and doesn't have much cancer risk. But that the most data they have on biologics is 8 years. But shes pushed me very hard to go that route. I have very persistent psoriasis, we both know that the other drugs you have to go through before biologics wont work but you know... gotta follow the "protocol". I also really don't like this and it makes me very skeptical and distrustful when it comes to the way derms treat pso.

I am a person who responds well to sun, i dont burn easy. Phototherapy has been great for me. Like a miracle. But its clear 1 treatment a week, especially during the winter, isnt enough and my derm has already told me i HAVE to come off soon.

I am not looking for medical advice, but wondering if anyone has used uvb long term? I would think using it every other day indefinitely is a poor idea but using it more or less (without going overboard) as needed seasonally might be a reasonable method of treatment.

What do we think? Anyone use UVB at home? Looking for feeback and insight from people who have lots of experience with UVB.

[Fred]

There have been some threads from members using UVB at home but I don't recall any coming back to give an update, so unfortunately I doubt you will get an answer from a long time user but this thread is on public view so it may get some feedback.

As you don't have much psoriasis a small amount of UVB would probably be ok, but I'm no expert and I wouldn't use any treatment for psoriasis without supervision but that is your choice.

[SquidBro]

There have been some threads from members using UVB at home but I don't recall any coming back to give an update, so unfortunately I doubt you will get an answer from a long time user but this thread is on public view so it may get some feedback.

As you don't have much psoriasis a small amount of UVB would probably be ok, but I'm no expert and I wouldn't use any treatment for psoriasis without supervision but that is your choice.

Thank you fred

[Fred]

Thank you fred

I've also put it on our Bluesky account.

[Caroline]

My two cents..

I consider UVB treatment as a dead-end street… I’m sorry.
But… it does help, only it is a very symptom driven treatment. You treat the skin, while the real problem is in your immune system.

It really is scientifically proven that too much sunshine, so too much UVB, can lead to skin cancer.
In the dutch magazine of the psoriasis association once was an article interview with an oncologist about this subject.
In another edition of the magazine there was an article of a very “light” treatment with UVB, so called Low-dose treatment.
That article tells about research that shows that daily low-dose treatment with UV, does not damage the skin and gives the skin each day time to recover. Allthough this research was very positive it was ignored by the Dutch dermatology society and never had a breakthrough.
Still I have such a unit in my house, it is a Dermasun machine, which is in my shower. So basically while showering I can switch it on and have a 3 or 4 minute treatment. (You need to wear protecting goggles).
I have Psoriatic Arthritis, but a higher dose of vit D, also works positivefor Psoriatic Arthritis, for the simple reason that vit D has an influence on the immune system, explains that effect.

Still I do think that the biologics are the way to go for the treatment of severe psoriasis. Biologics work fundamentally on the immune system, that is one step less symptom driven. Still they do not work on the cause.
As biologics are there for already quite some time and as severe side effects do not occur, I think it is a safe way to go.

[Kat]

Afraid I'm not much help. My first dermatologist put me on phototherapy, but also a topical and oral treatment so it's hard to say what worked and what didn't. I also later on with a different dermatologist try laser therapy and that one got me a nice scalp burn (long story) but didn't seem to help really.

I haven't had a lot of luck with biologics either to be honest. Topicals seem to help but I continuously have mild flare ups with just using those.

As I said, I'm not much help but I WILL say that I think there are many ways to treat things and if phototherapy was working for you then I don't blame you for considering that route. My first dermatologist recommended I go to a tanning bed and as he put it, they do NOT normally recommend those as well as some time in the sun. Yes, there are risks, there are always risks it seems no matter which route one takes. Some have managed by figuring out food triggers and learning what works for them through diet so I think we are all individuals with different mind sets, different bodies and different needs for treatments.

Sorry I can't give you info on long term phototherapy at home as I have no experience with that.

Good luck and let us know how it all goes!