Phototherapy Lamp

Posted Sun 18 Apr 2021 14.01 by Heavensent

Hi just wondering if anyone is selling a light therapy lamp? I would rather get from someone whom I can trust rather than EBay as I cannot afford it new! It helped so much but after my treatments ended it has started to come back 🙈

Posted Sun 18 Apr 2021 14.27 by Moggy1

Sorry I don’t have one to sell but I wondered how soon after your treatment your psoriasis came back. I am waiting to start phototherapy and my dermatologist said they are working on lamps with LED bulbs which will mean they won’t have all the problems with the light tubes and machines will be either-rented or bought and would revolutionise phototherapy therapy Let’s hope he’s right

Posted Sat 15 May 2021 23.49 by Ianhski

Hi, I am seriously thinking of buying a home lamp setup. Expensive but the hassle of getting referred to dermatologist and then put on a course of phototherapy over 12 weeks at a hospital outweighs the cost eventually. So now I am curious about the LE D version. Did your dermatologist give any indication of timescale? I know UVB works for me so getting desperate. I do have a hand lamp but since I have a whole body problem, it's not practical. UVB doesn't seem to help with scalp though. After years of Dovobet on scalp, I would love a better option. Ian

Posted Sun 16 May 2021 09.31 by Moggy1

Sorry he didn’t give me any any time scales but I have an appt at the hospital to discuss starting phototherapy so I will ask. I hope to have hospital treatment and then maybe buy a lamp and use for maintenance at home.. I to get very down but try and keep positive as stress doesn’t help Take care 😊

Posted Sun 16 May 2021 09.55 by Ianhski

Yes do try to keep positive. I find that remembering that in the scheme of things, there are much worse medical issues we could have and this won't kill us. There is always someone worse off. But I agree it's a total PITA and we would give a lot to be free of P. And I am thinking that what I haven't spent on holidays during the pandemic would be well invested in my own lamp. Just the scalp remains a problem as the light doesn't pass through hair. Take care and good luck.

Posted Sun 16 May 2021 10.19 by Heavensent

Hi, it was just to 3 weeks after I finished my course of light therapy that I noticed my previously worse areas reappearing. I asked if I could have a couple more sessions just to get on top of those areas but she said I was clear so I went with that. The light therapy treatment was a godsend even if it was for a short time. I purchased a handheld unit to use on the areas that are rapidly spreading. I’m not sure how long I can go on with the handheld it’s difficult to use on the areas that I can’t reach. I called my GP and told them I purchased a unit but wanted to be under the supervision of my dermatologist to which I have now been re-referred. she asked me to not use it and to use my topicals Dovabet! I have just purchased some CBD cream to apply as I have researched and the benefits of this are positive , expensive but a small price to pay if it helps. I’m sure you will be pleased with the results of your light therapy they normally only offer 28 sessions not sure if this is just due to funding or whether it’s not safe to use it for longer! Good luck sweetie 😇 x

Posted Sun 16 May 2021 10.30 by Moggy1

3 weeks isn’t very long but the way I am feeling I sometimes think 3 days would be a big relief from the creams etc. My dermatologist did say that in an ideal world people would be given maintenance phototherapy after the initial treatment say once a week and then once a month but hospitals don’t have the equipment or resources for this and that’s why he’s a big believer in home therapy supervised by the hospitals but he’s not sure this is likely to be implemented either ☹️ Thank you for your good wishes I will definitely let you know how I get on

Posted Tue 1 Jun 2021 13.46 by Moggy1

Hi everyone 😊 Well last week I had my appt at the hospital to discuss phototherapy treatment. The dermatologist I saw was very nice and was in complete agreement with the previous dermatologist I had seen that the phototherapy treatment provision in the uk seriously needs an over haul and at home therapy supervised by the hospital is the way forward. Sadly that seems in the distant future and evenly more disheartening is my wait for start of treatment is approx 39 weeks 😩 I will try and keep positive Take care everyone

Posted Tue 1 Jun 2021 17.04 by Steview
A P sufferer for over 30 years, through good and bad times.

Hi Moggy, wow 39 week wait, that is a long time. NHS hospitals could do with more UVB units to cope with the demand. As for home use managed by the NHS, I am not sure how that would work and how feasible it would be, the NHS is stretched enough as it is. Hope you find some relief in the meantime.

Posted Wed 2 Jun 2021 04.30 by Yacht

Almost a year to wait, for 30 seconds on a "sunbed". Gotta love the NHS... Fwiw, home-phototherapy canopies or cabinets can be privately rented in the UK within days, for up to 3-4 months at a time. For people with cash (not everyone has), there are faster solutions out there.

Posted Mon 7 Jun 2021 01.26 by LondonWest (edited Mon 7 Jun 2021 01.28 by LondonWest )
Had P on and off for many years 🤗

Bare in mind that if you do buy your own UVB light unit you will end up over using it. Ive had one for years and I’m reluctant to use it now. I found they would clear me 90% but as soon as you stop using it P comes back. So you end up in a downward spiral of over using them. You have something that will clear your skin at home most like me will simply just abuse it I wish I could be more positive on UVB light units but I’m just sharing my personal experience with using them

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