UVB treatment at home...

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Posted Tue 20 Jun 2017 09.17 by Billy boob

I have had p for about ten years I have had three full treatments of narrowband UVB which of been completely successful in clearing my p I wouldn't really recommend treating yourself indoors with narrowband UVB if you haven't had hospital treatment previously you run the very real risk of severely burning yourself at least if you've had hospital treatment you will have some understanding of how to treat yourself properly and safely As for the machines there are many available on the Internet another option would be buy yourself a secondhand sunbed and replace the tubes yourself with narrowband UVB Phillips TL01 The small hand held units really next to useless if you have multiple plaques in various locations not because they don't work because they do it will just take you an eternity to treat yourself

Posted Thu 6 Jul 2017 08.30 by Lynne

Hello. Does anyone have any experience with the hand held UV light treatment. I have just finished my 2nd course of PUVA treatment which has been very successful however it can't treat it in my hair. I have seen that you an purchase "comb" lights and wondered if anyone had any feedback? Thanks

Posted Thu 6 Jul 2017 13.44 by Millicent

Can anyone who has had success with full body home treatment give some idea of their timings please. I have had P for 30+ years and had quite a few light treatments at hospital and I know how careful they are to the second when increasing the times. Many thanks.

Posted Wed 12 Jul 2017 23.12 by tracey

Hi, I have had psoriasis for 35 years, and over those years have tried everything, creams (which thinned my skin) Puva, which burnt my skin, but did clear it up for a while, Acetretin tablets, which made my hair fall out, again worked for a while, and lastly methotextrate injections, which again cleared my skin, but I was forever having to have blood tests as my immune system and white blood cell results were all over the place and having to have my liver checked and scanned, so finally now my psoriasis is back with a vengence (covered all over my body), I have decided to purchased a UVB narrowband canopy with 9 full length tubes which I am awaiting delivery of. I am sick to death of pumping my body with chemical and toxins so am going to give this a try. I will keep you posted with my results and timings I am using over the coming weeks. Good luck with your journey of this horrible infliction

Posted Thu 13 Jul 2017 10.13 by Millicent

Thanks Tracey, looking forward to updates.

Posted Thu 13 Jul 2017 17.48 by Gemma100

Hi Tracey. I bought myself a full length canopy around 3 months ago - best thing I ever did. At the moment I am doing PUVA at hospital, which took weeks to get an appointment, hence why I bought a UVB canopy. By the time my appointment had come round the majority of my psoriasis had cleared or well on its way to clearing by using the canopy. I still had some that needed clearing at the bottom of my legs and some mark from other areas. UVB worked great for me. Some of the patches were so bad I thought I was scarred for life, I was wrong they completely cleared and looked like normal skin again. Please be patient, it does take a while to build up the exposure so that it works. At one point I thought it would never work. I found it did very little until it started to tan me. Be careful you don't burn. I did accidentally burnt my arms once which were sore- but the good thing about it flattened the plaques overnight. I used it for about 8 weeks before my appointment, every other day. I only got up to 2 minutes 15 seconds and it started to clear areas (I am fair skinned). I started at 30 seconds then increase at 10 seconds at a time. Should you burn reduce it back down until your skin gets used to it. At one point I did get some rashes of Polymorphic Light Eruption. Don't worry if this happen because by carrying on using the UVB it clears. Good Luck! I hope it work as well for you.

Posted Mon 24 Jul 2017 10.04 by EddieC

Hi Tracey, I have been toying with buying a a canopy 9tube bed probably similar to your purchase(£1350?) My only worry is over-exposure and risk of skin cancer(my wife's nag) I have had 2 separate 15-20 sessions last 2years using hospital uvb beds which do clear my skin completely but within 5-6 months plaques and itch comes back. Have used loads of creams from eumovate to betnovet to dovobet etc etc in last 20yrs with no great results. Uvb is my best treatment. Using elecon at moment but still no better. Sulphasalazine has helped my face and more notable my joints. Would you recommend home uvb treatment then? Thanks,Ed

Posted Sun 30 Jul 2017 18.57 by tracey

Hi Ed, As mentioned in previous post I have tried everying over the years, and every treatment has its risks. I had PUVA 2/3 times 20 years ago, which cleared my skin for months and the sun does help me. I have a 9 tube UVB narrowband unit being delivered on Tuesday so intend to use this every other day and will keep you all posted on results. I have given up on the creams, lotions, tablets and injections all of which I have suffered side effects from. Creams thinned my skin, tablets made my hair fall out and the injections were affecting my liver. So decided (for me) UVB the better route, no more chemicals being pumped into my body and UVB comes from the sun, which the skin can adapt to in moderation.

Posted Mon 31 Jul 2017 09.43 by EddieC

H Tracey Hope all goes well with uvb,let us know how you get on with it. Fingers crossed it works. Ed

Posted Wed 2 Aug 2017 16.44 by tracey

Well, got my UVB canopy delivered yesterday, so started my first session today, started at 40 seconds, so will increase to 50 on Friday. Looking forward to seeing the results and will keep you all posted on my progress Tracey

Posted Wed 16 Aug 2017 09.40 by Gail

I bought a full length canopy unit from MBS (www.treatpsoriasistl01uvblamps.co.uk) about 5 years ago with Philips TL01 tubes. I had psoriasis mainly on my body and legs. Initially I kept a diary of my progress, My body was virtually clear after using the unit for 5 weeks with just a few persistent patches remaining on my legs, these cleared a few weeks later. I just use the unit now when it starts to come back roughly every 4 to 6 months. I had doubts at first and was hesitant at paying out so much for a unit at home but best thing I ever did. Gail

Posted Tue 22 Aug 2017 20.29 by Simon - 68 from Dorking
Had it for years but survived!

Hi Gail, how many tubes did you go for? Simon

Posted Wed 23 Aug 2017 12.33 by Millicent

I am keenly following this post as I too am seriously considering purchasing a bank of lights. My psoriasis is dreadful - it is just, as you all point out, such a lot of money to be paying out. But previous narrow band light treatment at the hospital has always helped. Mandy

Posted Wed 23 Aug 2017 20.15 by allan m

a more affordable option is to purchase a second hand sunbed and replace tubes with tl01 tubes 10 tubes would cost around £400 tubes are easily changed takes about 20 mins

Posted Wed 23 Aug 2017 20.38 by Billy boob

Where can you get the TL01 tubes for that price

Posted Wed 23 Aug 2017 20.51 by allan m

got them online from medical supplier was a few years ago available on ebay at £70 each contact phillips direct ask for suppliers

Posted Wed 23 Aug 2017 21.40 by Billy boob

Yep that is a little different that will cost you £700 for the 10 I have found a reputable place that can supply them for £60 If any of you good people can get a better deal let me know

Posted Thu 24 Aug 2017 10.28 by Millicent (edited Thu 24 Aug 2017 10.28 by Millicent)

Being the most un-technical person alive - can I ask for some basic details. Happy to look and purchase a second hand sun bed and replace tubes, but are they all the same size or not please and do I need a specific sun bed ? Sorry for such dumb questions. As much basic info as possible would be great.

Posted Thu 24 Aug 2017 14.21 by Billy boob (edited Thu 24 Aug 2017 14.22 by Billy boob)

The standard tubes are 6ft the best ones for the job are TL01/100w That is a 100 Watt 6ft tube You must make sure the tubes you are removing from the sun bed are 100w (they most likly will be) Other than that it's like changing a light bulb Just google change sun bed lamp https://youtu.be/x6p4SyG7jjY

Posted Thu 24 Aug 2017 16.40 by Millicent

Thank you for the reply. Another stupid question - does it matter what the wattage is of the bulbs I take out ? or do I simply need to replace whatever with 100 W TL01 light bulbs. Thank you.
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