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. 😥

Posted Sat 25 Apr 2020 2.36pm by Kim

Hi, I agree with Nina as I purchased a handheld one, which I use 3 times a week and has helped. Being a smaller equipment, it does take almost an hour to do the areas I need. longer if I have new flare ups.

Posted Tue 28 Apr 2020 6.40pm by Lindylou

Hi

I too have just posted a long post and lost it 🤦‍♀️

Posted Wed 29 Apr 2020 4.44pm by Lawrence Bird

I'm not sure what type of insurance some of you have but I have a high end Kaiser plan. I was approved in March for a 6 foot light therapy unit for my home and the total cost was $224. My psoriasis covers 40% of my body but thankfully none on my face or scalp and also my job as an exterminator mandates long sleeves, long pants and rubber gloves so customers never see any of my condition. The dermatologist says this is the safest treatment with the fewest side effects and also one of the most effective treatments. Btw, without insurance, you can still get this same 6 foot light treatment home unit for about $1,100 from Kaiser.

To take part, sign in or register with us

The Psoriasis Association is the UK's leading national charity and membership organisation for people affected by psoriasis – patients, families, carers and health professionals Read More >

Get in touch

The Psoriasis Association Dick Coles House 2 Queensbridge Northampton NN4 7BF

Email: mail@psoriasis-association.org.uk

Tel :
01604 251 620
WhatsApp :
07387716439
Registered with Fundraising Regulator -

© The Psoriasis Association Charitable Incorporated Organisation Number: 1180666 Scotland: SC049563 Privacy PolicyCookies

Site by Spoken Image | glitterfish

We use cookies to help us provide you with a better service, but do not track anything that can be used to personally identify you.

If you prefer us not to set these cookies, please visit our Cookie Settings page or continue browsing our site to accept them.