Long wait for phototherapy

Posted Thu 5 Mar 2020 2.31pm by Jay13k

I was referred to light therapy by my dermatologist during mid December. During then my psoriasis had appeared almost everywhere however they were small dots and they made the decision that my condition was not severe and put me onto an 18 week waiting list. My psoriasis has now grown and joined up and has almost covered my whole body, sometimes so painful I cannot leave my house. Now that my condition has become more severe, is there anyway I could inform the hospital of my current condition so they could provide light therapy sooner?

Posted Thu 5 Mar 2020 4.49pm by OhNo_NotAgain? (edited Thu 5 Mar 2020 4.50pm by OhNo_NotAgain?)

Phone your dermatologist and discuss the situation. Or phone the dermatology department and leave a message, requesting the dermatologist call you.

Posted Tue 10 Mar 2020 2.07pm by Nina

I had the same problem. I have purchased my own canopy sunbed and have ordered the exact same light bulbs they use in the hospital and now can treat myself whenever I have a flare. I know it's costly but psoriasis is a long term issue so to me it was worth spending the money.

Posted Wed 1 Apr 2020 10.41pm by Itchylegs

Hi Nina, how do you know if that's safe? How long do you stay on for?

I'd only just started my light treatment last week but it has all been stopped because of Covid. Really upset as I was starting to see a difference.

Posted Thu 2 Apr 2020 5.03pm by Nina

Hi this is annoying. I thought I sent the message but I was timed out so having t9 do this again. I buy mine from the only distributor in UK. They are the exact ones they use at the hospital. I've had treatment for yrs at the hospital so I just mimic what they do. I start at 15 sec and because I'm dark skinned I went up 30 secs each time ( you could do 15 secs each time) . I knew when to stop increasing my time when I had a slight sunburn, I would the. take off 30 secs and stay on that time for a few sessions and then build up again. As I'm dark skinned the hospital would build me up to about 15 mins and by that time my skin has cleared up mostly. If you need any further info, let me know. It's the best investment I have made. No more waiting ages for treatment. I decide when and for how long.

Posted Fri 3 Apr 2020 9.02am by Itchylegs

Hi thanks for replying. Did you buy a normal sunbed (top and bottom) that you lay on and then replace all the tubes? Sounds expensive?

Am wondering about one of the lamps you see advertised but no idea what strength or whether they are safe.

Posted Fri 3 Apr 2020 11.32am by Nina

I only got half a canopy as the full body ones were too expensive. It does mean that I have to lay on my front and then my back which does take more time, but still worth it. Try looking for half canopies second hand and then just change the light bulb. this is where I got my bulbs from and they also give you the option to get it VAT free because it's a medical condition. These bulbs will last you about 10 yrs so yes it's pricy but worth it. https://www.psoriasiscare.co.uk/ (this is what they use at the hospital)

I needed to get 9 tubes for my sunbed and that cost me £567 (VAT free price), so yes it is pricy but over 10 yrs it's not that much.

Posted Sat 4 Apr 2020 1.51pm by Itchylegs

Thanks Nina, certainly pricey but if it helps keep it at bay it's worth it. Who knows when the hospital will call me back for treatment. 😥

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