Nb-uvb side effects?

Posted Wed 12 Apr 2023 07.27 by mt382

Hi all, For background I'm an ex-biologist turned medical student - longterm home NB-UVB user. Every year when I'm doing NB UVB over the spring months, I become tired, depressed and generally have an upset stomach with pretty bad exacerbations of daily diarrhea. The actual research into NB UVB is lacking beyond efficacy and short term skin cancer safety profile, so I thought I'd ask whether any other long term home or clinic NB UVB users had spotted any patterns of side effects as part of their treatment? This is just for personal interest. My psoriasis sits uncomfortably between topical doing absolutely nothing and my dermatologists won't prescribe systemic because there's no joint involvement and it only (quite comprehensively) covers my arms and lower legs. So NB UVB remains the main approach for me, but with it seem to come some quite debilitating GI and mood effects. Any experience shared would be appreciated.

Posted Sun 21 May 2023 22.56 by LondonWest
Had P on and off for many years 🤗

apart from itching i didn’t get any bad side effects from using a home unit clearing doesn’t last long and psoriasis comes back as soon as you stop using the home light unit = slowly but surely

Posted Mon 22 May 2023 15.19 by Steview
A P sufferer for over 30 years, through good and bad times.

We know that there is a risk of sun cancer and so does exposure to natural light of course. The only side effects I experienced was burning on odd occasions. Maybe the reactions you are having are related to something different. Plus if you know you get these reactions why continue to use the NUVB at home and how are you monitoring your exposure at home? In a clinical setting your exposure is monitored and thus you can report these side effects to the nurses.

Posted Mon 22 May 2023 15.29 by mt382

Hi there, it is odd. I had the same mood changes when doing it in clinic all those years ago. I'm a bit surprised by your question - the obvious answer is that getting NBUVB take ages and inconvenient for most to actually attend alongside work and family commitments. My dermatologist actually gave a wink wink nudge nudge instruction to self treat at home on our last meet, because it works, the research (he says) for skin cancer is speculative and not really grounded in hard data and he said, I quote, "We all die, you - like everyone else - may get skin cancer when you're older anyway, and the alternative is not treating your psoriasis - carrying on at home seems sensible".

Posted Mon 22 May 2023 15.54 by Steview
A P sufferer for over 30 years, through good and bad times.

Well if your dermatologist gave you the wink then that's fine. Will your home usage be noted on your patient records? It is strange you are willing to put up with all the side effects from light treatment but not willing to try systemics if you were offered them. As your dermatologist said we all die, you may get skin cancer etc. So why so against systemics, they may work, you may not suffer ill effects. Sounds like you have a good rapport with your dermatologist, convincing them to sign off biologics shouldn't be a problem then. Good luck.

Posted Mon 22 May 2023 15.59 by mt382

I'm happier with the long term isolated risk of skin cancer and the NB UVB side effects I describe only really kick in at higher dosages (probably cumulative effect of being pink all over a few times a week!) Immunosuppression on the other hand... I'm constantly ill as it is as I have two young children, and I have asthma and am not happy to add long term risk of lung fibrosis onto that as well. I have, historically, had some alcohol problems so I don't wish to compound that with added liver toxicity either I wish that were true regarding signing off! He actually discharged me right after saying (basically), "you're managing it with NB UVB, there's no point me giving you UVB as it would take longer and if UVB is working, why would I 'shut your immune system off'". He was a nice man but very reluctant to prescribe systemics.

Posted Mon 22 May 2023 16.54 by Steview
A P sufferer for over 30 years, through good and bad times.

You are In a tough position I am afraid. Getting discharged is the last straw I.m.o. unless as you put it managing yourself with UVB. As you will be aware though risks come with that with over exposure. By the sounds of it your ideal is biologics, who's to say you won't have side effects on those, then back to square one. Tough call do you continue managing at home with all the aide effects,nor force the issue and let your P deteriorate to a point you need medical intervention and bite the bullet with systemics. Have you though about a second opinion from another dermatologist? Whatever you believe about the facts of going straight to biologics you will have a fight on your hands. Best of luck to you.

Posted Tue 23 May 2023 12.18 by AzureBlue

I use a NB UVB canopy at home and have none of the side effects you listed. I never burn or go pink using it, and although there is a theoretical risk of skin cancer, it has to be balanced with the quality of life associated with having clear skin.

Posted Mon 5 Jun 2023 18.28 by Yacht

I'd be getting a 2nd or 3rd opinion from a new derm. Saying you can't get biologics, when your legs and arms are covered in nasty psoriasis, is unfair and quite bizarre. Ditch and switch.

Posted Fri 9 Jun 2023 11.50 by mt382

Thanks Yacht. It really has got worse over the years. Part of me wonders whether the NB UVB giveth and taketh as its much more pervasive these days than it used to be. I wonder if it treats existing plaques but introduces low level damage and triggers the koebner phenomenon. My last ditch effort at avoiding biologics is that I've ordered new TL01 bulbs for my machine. I haven't changed them since 2014. However, the manufacturer gives % loss of NB UVB wavelength over time and i shouldn't have used them enough for that to matter yet, unless they simply reduce in efficiency with time even when not used. I will report back if new bulbs helps

Posted Sat 10 Jun 2023 15.20 by mt382

Oh my God! Absolute light bulb moment! I was googling reactions of skin to UVB just to try and work out why the more I treat my skin, the more guttate seems to appear, and I stumbled upon my answer. Google pictures of polymorphic light eruption are IDENTICAL to the rashes on my legs and arms that I mistook for guttate psoriasis. Basically, I've been hitting the NB UVB hard, my plaques have flattened and browned, but I've also erupted all over my legs, stomach and arms. I think I'm treating my plaque effectively, but triggering PLE, which annoyingly has a tendency to turn into psoriasis when it settles... Really need that dermo appointment. I've contacted a local private dermo to get a quick consultation in.

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