UVB treatment at home...
Posted Mon 3 Dec 2012 5.13pm by jamief
Hi everyone, I'm new to the site so go easy ?
A little back story... I've had p for about ten years, it started with a few small spots on my elbows when i was 20, now i have large patches on my elbows, many small spots over my legs, patches on each nuckle, some in my scalp and in the last year or so patches on my face.
I’ve read a lot over the years where people say sunlight or light treatment really helps. I haven't been abroad much in recent years, but had 2 weeks in Mexico on honeymoon in 2010 and my skin cleared up a treat.
It gradually came back after a few weeks, and is as bad as ever now, so I thought i'd take a punt and get a UVB light for home use. I won't plug the site, but I’m sure you all know where it’s from or see it advertised (cost £150 ish and is handheld). I've started using it the last few days. It’s obviously very early days, but i wanted to see if anyone else has this product, or administers UVB at home. If so, what effects have you seen. Is there anything i should be careful of etc etc.
Posted Tue 4 Dec 2012 10.11am by TimA
Plaque psoriasis over most of body: especially shins, elbows and hands.
Tomorrow I start my 3rd series of UVB treatments at the hospital. When I saw my dermatologist, I asked her about home phototherapy and she seemed surprised that I was thinking about it. She was most worried about people using UVB at home without being monitored by medical staff. She was also worried about the quality of lamps bought over the internet. She even went to the trouble of contacting a Dr Anstey in Cardiff, who hires out equipment for people at home - but it was far too expensive for me to do it that way.
I am covered from head to toe in plaques, some areas quite large. I find UVB the only thing that really clears it up. So, like you, I did some reading about home treatment. If you are careful, it seems safe to me. There seems to be a lot more of it in the USA.
I would very much like to know how you get on, and if there are other people using equipment at home. It is impossible to know if what you are buying online is safe or if the company is reputable.
I see no reason why people should not post details of equipment on this site - if they can recommend it, it may help others. It is something I would like to buy in the future, in order to keep my p in check.
Cheers, and good luck.
Posted Wed 5 Dec 2012 11.35am by jamief
Thanks for the response. I'll keep this thread up dated with how i get on. I've used it 4 times now in the last 5 days, following the instructions for increasing the exposure each time. I've started doing it just on one arm to see what happens and so i can see if there is any difference between the two. So far i can't really see any change, but most reports do suggest it takes about 10 sessions to see improvement.
I can understand why dermatologists don't give positive advise about doing it at home. Its to much risk for them if something happens and you blame them. I've tried to go down the derma root before, but found the person i was referred to, to be very rude and not at all interested in helping me. I was left feeling that my case was severe enough to get any real help. Which was a shame. I hope other peoples experiences via the NHS have been better than mine.
Anyway, i'll keep at it and keep posting updates.
Posted Thu 21 Feb 2013 2.18pm by TimA
Plaque psoriasis over most of body: especially shins, elbows and hands.
They stopped my UVB treatment at the hospital after 24 sessions (instead of the max 30). I was up to 7 minutes in "the box" and all my p had gone, except on the soles of my feet and palms of my hands.
So, I have bought a narrowband lamp on eBay for $100 (US) - which is about £65 currently - including p+p. It was sent very quickly from Israel. Be careful though - I nearly bought a lamp that was not narrowband.
That's much better than the price you find on Amazon, or androv-medical etc.
Let's hope it works!
Posted Sun 14 Apr 2013 11.23am by handel
Extreme embarrassment when having plucked up courage to wear shorts and/or teeshirts in summer. Constant itching affects concentration.
I registered with the Psoriasis Association today (6 March 2013) mainly to find out what all you existing members had discovered about narrowband UVB home treatment. It's so confusing at first trying to find equipment which will provide good treatment and is safe. I read the posts here and it seems as though you are as much in the dark as me. It appeared that a lot of research was needed to satisfy my own concerns. Most doctors and nurses giving phototherapy in outpatients departments are very much against home treatment so there's no advice available there.
I decided to try home treatment since the dermatologist I've been seeing wrote that "there is considerable pressure on our service and you are unlikely to start treatment for a few months yet".
I started by looking at four websites of companies selling UVB products. Two of those clearly state that they use only Philips TL01 high UVB narrowband tubes. One of the remaining two probably does and the other probably doesn't. The devices using Philips tubes are quite expensive but I have decided that that's the only way to go. Their tubes have been developed to produce a peak 311nm between 305 and 315nm and are the only ones used in hospitals. Many of the other manufacturers' tubes have nowhere near that accuracy and could be emitting a lot of UVA which causes the reddening of the skin and of course is not as safe as (or more dangerous than) UVB.
I am not a specialist in this field and have researched as much as I can only online and with a very helpful gentleman at MBS from whom I've ordered a unit this afternoon. It cost £600 so I do realise that that is a lot of money for those who are younger than us in our mid seventies. I will be starting my treatment on Friday the 8th. or Monday. I so hope it works well.... I'll let you know.
Posted Sun 14 Apr 2013 3.53pm by handel
Extreme embarrassment when having plucked up courage to wear shorts and/or teeshirts in summer. Constant itching affects concentration.
Sorry if I caused some confusion regarding my first post dated above as the 14 April but dated in the text as the 6 March; I did something wrongly and the message didn't get posted so I re-posted it today. Below is an update.
Well, a disappointment. The lamp was unsuitable for a number of reasons. It was returned and MBS were very good and within a day the cash was back in the bank.
I didn't switch on the tubes so there is nothing to report about their efficacy. They were the correct type though, Philips Narrowband UVB PL-L36W/01.
Two weeks after returning the lamp the local hospital called to say that there was a space for me to get UVB treatment in their cabinet. There is a problem though, they insist on my wearing the visor so my face doesn't get treated. Bother - but beggars can't be choosers.
Posted Sat 24 Aug 2013 11.22am by vstable (edited Mon 25 Aug 2014 3.09pm by raquelle)
I have severe psoriasis on my feet and hands, plus patches on calves and elbows.... it is painful all the time.
Full size UV Light Box, looking for a home!
Please see the spec in the UV Light Box thread - it just needs collecting from North London.
Posted Mon 21 Apr 2014 2.02pm by smudge
Psoriasis has affected my arms
I have suffered with psoriasis for many years & had invested in a hand held unit. I suffered with psoriasis over many parts of my body & although the unit helped slightly I became bored treating individually the various disease locations. I eventually ended up selling the unit on E Bay.
I have now invested in a full length unit which is stronger & can now treat my whole body in one short session.
I looked at various web sites & spoke with a dermatologist who advised me that if I did proceed with this purchase, to ensure the full unit contained Philips Narrowband Lamps, as used in hospitals. Eventually purchased from a company in Bristol called Skinmatters & I must say that the full body unit has provided me with clear skin for the first time in many years.
Posted Sun 17 Aug 2014 1.05pm by John
I have suffered with it for nearly forty years.
Hello I am new to this site, but have suffered P for nearly forty years.
I have been treated in the U.K. some years ago with UVB and it really does work. So much so that when I bought a home in Spain I invested in a walk in unit (supplied by the same German company that supplied the machines for the hospital). It works fine but just like the hospital I keep exact records of the exposure times and also after a number of sessions I cease to use the unit for as long as possible.
I do believe there is a danger for continued use in the long term, so there has to be a balance and a slight risk is attached for the long term user.
Ironically my decision to buy this for me a very expensive piece of equipment, was brought about because even though I have been spending much time in southern Spain the sun has not proved to work with my Psoriasis.
Discussing this with a consultant of very high standing in Spain at an important hospital he was amazed to hear that I was administering my own treatment, and even more surprised to hear that the sun in sensible doses was not working for me. My surprise was that they do not even have such a treatment at that hospital at all, and the nearest hospital with such equipment with UVB (PUVA) is over sixty miles away.
Posted Sun 30 Nov 2014 5.04pm by smudge
Psoriasis has affected my arms
I have been having UVB Narrowband treatment at my local hospital which has been very successful. I did ask my dermatologist about purchasing my own unit that I could use at home. He said if I decided to buy a unit he would work out a treatment plan for me, he also said if I decided to go ahead to ensure I purchased a unit containing Philips TL/01 tubes the same tubes as Hospitals use. I have been looking at various websites but find very few who actually state their units contain these lamps. I found one website that actually said they were working in partnership with Philips but strangely, the units were not fitted with Philips lamps.
Posted Sun 26 Jul 2015 5.43pm by smudge
Psoriasis has affected my arms
I have been looking to purchase a Phototherapy unit for use at home, after securing the agreement of my Dermatologist. He recommended that the unit came fitted with Philips TL01 lamps. I found one website that said the units had ” Philips Electronic Ballasts” so I assumed they also had Philips TL01 lamps. Alas, they did not!! I mention this, so that other sufferers of Psoriasis are not deceived. It pays to check before purchase.
Posted Mon 2 Nov 2015 12.14pm by ALIH44
confidence & depression
i've just purchased a home unit with the philps lamps - for those of you using them either at home or the hospital can you tell me your timings please?
Posted Tue 17 Nov 2015 6.47am by Robert Jones
mental, emotional, physical
Hi Jamie, i have been treating my P at home for a few years with great results. i have a full height UVB machine which i managed to find on ebay of all places. i use it very carefully and in conjuction with coal tar lotion. Good luck, hope you get the right results.
Posted Fri 11 Dec 2015 9.33pm by apatel1 (edited Thu 7 Jan 2016 5.36pm by email@example.com)
I have psoriasis for about 15 years. Very mild thankfully, small plaques and scales at ears and elbows. More recently though I have foot pai
Narrowband UVB works for me. I bought a handheld one so its low wattage and I use it for 5 mins at a time per patch. It works very well, and after they are gone (takes 1-3 months) they don't come back. I'm almost psoriasis free, but I might have psoriatic arthritis of my toes, I'm going to try shining UVB lamp on my foot and see if it goes.Has anyone else tried this?
Posted Thu 7 Jan 2016 5.37pm by Leahd
I have scalp psoriasis and smal patches on my body
im researching a similar product for myself. ive seen one for about 168 but and advice of websites and products would be really helpful
Posted Sat 9 Jan 2016 5.35pm by JKClements
I have scalp Psoriasis, also on my elbows and I've had guttate all over my body previously.
If anyone is interested I am selling a hand held Psoriasis Dermalight 80 UVB Comb. Never used so in very good condition.
£75 and I can arrange for it to be posted. I'm in North London.
Just email or call if you'd like more info.
07970 230 381
Posted Mon 11 Jan 2016 9.29am by beesnees
From age 5
Hi, I'm new to this forum. I've had psoriasis since I was 4 on and off. I have had UV treatment at a hospital but it was proving to be a nightmare travelling to the hospital and getting to work so I bought a lamp of my own.
In conjunction with my GP, I have been using Exorex lotion 5%.
I'm wondering if this is the best coal tar option to use. My GP is not clued up on skin and the dermatologists in my area are all locums who know less than me! (I had a nightmare with them last year)
Any advice would be welcome.
Posted Wed 30 Mar 2016 8.06pm by Birgitta
I have had psoriasis for 30 years and I am now at my worst level with both calfs covered , some on my elbows and writst.
Hello, i have just bought the same product. How did you get on with it?
Posted Fri 13 May 2016 8.47am by TimGuyUk
I have it. Head, arms, legs, body. Tried everything failed. Here to discuss UV light
I'm about to buy a home unit. It will have to be a hand held unit because of the price.
I was looking at the unit that's currently on UK Ebay with the Philips bulb (chap sat on his union jack bed). It will take some time as I'm head to toe but at least I can see its visability.
So how is everyone getting on. I see people posting that they are thinking about or have purchased but no follow ups 2-3 months, year down the line.
Is it worth it?
Posted Thu 23 Mar 2017 7.05pm by Sasha100
Started with psoriasis around three months ago. So far I have been given dovonex which badly burned me and I had a bad reaction to. Next I have been given dovobet which I understand is dovonex with a steroid. Which after using a short length of time also burn me and gave just about every side effect going.
Been back to doctor who have suspended treatment for two weeks to allow my skin to settle. It hasn't it has got worse and is spreading and about 20 times worse. Probably triggered by the medication.
Had a doctor out today because had a major burning sensation all over my body. Said they are going to send me for Puva treatment, probably be months down the line. Feel like they are fobbing me off. Doesnt sound like they are going to try anything else to help.
I have seen a number of people have had a lot of success with uvb home lamps. Seriously considering purchasing one. But I intending taking it slowly and being careful.
Has anybody tried these because at the moment it looks like I am going to have to try a help myself.
Posted Tue 20 Jun 2017 9.17am 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 8.30am by Lynne
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?
Posted Thu 6 Jul 2017 1.44pm 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.
Posted Wed 12 Jul 2017 11.12pm 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 10.13am by Millicent
Thanks Tracey, looking forward to updates.
Posted Thu 13 Jul 2017 5.48pm by Gemma100
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 10.04am by EddieC
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?
Posted Sun 30 Jul 2017 6.57pm by tracey
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 9.43am by EddieC
Hope all goes well with uvb,let us know how you get on with it. Fingers crossed it works.
Posted Wed 2 Aug 2017 4.44pm 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
Posted Wed 16 Aug 2017 9.40am 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.
Posted Tue 22 Aug 2017 8.29pm by Simon - 63 from Dorking
Had it for years but survived!
Hi Gail, how many tubes did you go for? Simon
Posted Wed 23 Aug 2017 12.33pm 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.
Posted Wed 23 Aug 2017 8.15pm 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 8.38pm by Billy boob
Where can you get the TL01 tubes for that price
Posted Wed 23 Aug 2017 8.51pm 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 9.40pm 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 10.28am by Millicent (edited Thu 24 Aug 2017 10.28am 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 2.21pm by Billy boob (edited Thu 24 Aug 2017 2.22pm by Billy boob)
The standard tubes are 6ft the best ones for the job are
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
Just google change sun bed lamp
Posted Thu 24 Aug 2017 4.40pm 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.
Posted Thu 24 Aug 2017 4.47pm by Billy boob
I think all the Philips 6ft tubes are 100w
The reason you need to check the wattage of the tube you are taking out is the sun bed may have been designed for lower wattage tanning tubes and if you put in a 100w tube you MAY fry the transformer inside the sun bed
As the tubes do not run directly from the mains
You can get smaller lower wattage tubes but this will will impact on the effectiveness of the treatment generally the hospital will give you 40ish treatments starting out at 20 seconds and increasing at around 10 percent every other time
Posted Thu 24 Aug 2017 4.57pm by Millicent
Ah - makes perfect sense.
Thank you for that ! - can I please ask if you know about RUVA tubes ? Do I need any of those as the ones I am looking at seem to have narrowband and these RUVA tubes
Posted Thu 24 Aug 2017 5.07pm by Billy boob
RUVA are sun tanning tubes and are most likely what will be in the sun bed when you get it
I don't think it's a good idea to mix and match
RUVA can cause more harm to the skin than UVB you often see tubes for sale on eBay for a tenner that say "high uvb"
In my opinion these will not help
Also I would not bother with any other make than Phillips TL01
This is what the hospitals use and they have a proven track record
Posted Fri 25 Aug 2017 11.46am by Millicent
Thank you, that has been extremely helpful.
Posted Fri 8 Sep 2017 2.41pm by wu_swordsman (edited Fri 8 Sep 2017 2.43pm by wu_swordsman)
Its so good to hear so many people having purchased the 9 Tube Canopy with a full 9 Philips TL01 Narrowband Tubes. I too purchased mine in 2014 after a severe outbreak of Psoriasis 2 weeks before I was about to fly out on a weeks holiday. My skin was in full swing by the time I flew out. I spent all day in the air conned hotel room watching movies only coming out at night fully clothed into a 30 degree heat. People commenting and staring because I was dressed in shorts and t-shirt. It was the holiday from hell.
Needless-to-say, with referrals and waiting lists taking up to 6-10weeks to process and then another 10-12 weeks to start to clear, (meaning it can take up 6 months off suffering in total every few years when it kicks off). I reignited my search for a UVB home treatment solution.
I have suffered from psoriasis going on 20 years now with a major flare up taking place usually every few years over 90% of my body (once pustular requiring a course of immune suppressant cyclosporin). It is 6 months of torture everytime. After being caught out on holiday in 2014 I vowed to find an alternative to this torture.
Having researched home treatment solution before and hitting a wall due to licensing and legal requirements, not to mention the price of UVB beds and their unavailability to the public. I was pleasantly surprised to find that a british company "much better skin" or MBS as the are called provided home treatment beds as there was no longer stigma over licensing. MBS are thorough and ensure you jump through hoops and know what you're doing before releasing for purchase but it was one of the best decisions and solutions for me.
Whenever I have a break-out for my skin I start at a comfortable time (1 min currently) and increase by 10% each time. I do this twice a week (usually a Mon & Tues) much like in hospital and log every treatment for redness, when a pillowcase should be used etc. Typically I see a response within 10-12 treatments (5-6 weeks) and the I'm usually clear by treatment 16 (week 8)... a very bad flare up can take up to 19 treatments (10 weeks) ....but it never fails to clear me for a significant amount of time. I do have a patch that pops back on my back but that is usually it for two years before another major flare up hits.
It is the best decision I have made in my life. As you will know you can feel the trigger (your skin goes nuts, prickly, itches like made). If you start a course immediately. From day of trigger to clearing is 10-12 weeks...that's half the time it take to be referred and treated in hospital and by week 6 your confidence is already back as the patches started to smooth out...being able to wear normal clothes in most instances. Its a breath of fresh air and no longer is that fear cast over of "what will the doc say", "wheres my referral at" " how long is the waiting list"....those fears don't exist....and to top it all of its in the comfort of you own home and effortless. No travelling to hospital, fighting your appointments around work, parking charges or stress. I literally wake up, blast UVB, shower then work....it becomes routine and before you know it you are clear and happy.
All Hail the 9 Tube UVB Canopy! I also worked out that a UVB bulb last:
The Philips TL01 100w Narrowband Tube (PhilipsTL01 100W) has a life of 1000 hrs...this equates to:
at 3-4min per session twice a week thats approx 8 min a week which equates to
7380 weeks of use
if each course goes an average of 16 sessions / 8 weeks you will be able to get 922 weeks/461 treatments of use out of the bulbs. Which means realistically the bulbs should be good for 29 flare ups before needing renewed.
For me who flare every couple of years - the bulbs should last me a good 50 years.
...so dont go fretting about bulbs going...it will be a looooong time before you need to change any...but at £70 a pop...least you can spend the duration saving and buying one from time to time to gather a collection for when the time comes :)
I can provide info on how to obtain your UBV Bed from MBD, thankfully the did interest free credit. I can also provide Treatment timetable that include times by percentage for you to use as a guide. just hit me up and I can email over.
thanks all, Dan
Posted Wed 8 Nov 2017 10.48pm by Mikey18
How do I pm you to get timetable details etc?
Posted Sat 18 Nov 2017 8.41pm by Dan
I've just bought a dermalight 80 handheld device for patches that I've had for years on my knuckles,elbows and knees. I've followed the instructions that came with it and I'm now up to the maximum of 3 mins per treatment after starting at 30 secs. I'm 10 days in and I've noticed a difference in the short space of time, my patches have gone smoother and it looks like healthy skins trying to come through, I'll try and post any progress over the next few weeks
Posted Mon 20 Nov 2017 1.37pm by mike m
I have had psoriasis for the last 30 years, varying from severe episodes to periods where it almost completely disappears.
Following severe attacks, on three occasions I have had PUVA treatment, all of which were successful for a time.The last was some years ago at UCLH in London.
However after a recent episode I asked a consultant dermatologist at UCLH for a referral and drew a blank - she thought UCLH doesn't offer it any more and put me on the usual regime of ointments and baths.
Can anyone tell me if any NHS hospitals in London still offer PUVA treatment ?
Posted Thu 14 Dec 2017 12.29pm by Glaro
Currently searching for replacement full length Philips TL01 lamps and the cheapest I can find are £63 each from PsoriasisCare.co.uk
Posted Wed 20 Dec 2017 10.44pm by StevenM1
I;ve been looking into this model for a long time now, any body have any experience with it? It seems like the best one for the price and it uses Philips UVB bulbs
Posted Mon 8 Jan 2018 3.53pm by monty77
Long time reader, first time poster.
I've tried all the lotions under the sun, UV (natural, sunbeds or PUVA years ago) is the only thing that helped me. Looking at mid size units for home use now, even with private medical cover getting treatment takes forever and just isn't convenient.
..this is a bit of a bargain if anyone was thinking of going down that path. No affiliation just trying to be helpful.
Posted Thu 18 Jan 2018 11.50am by wu_swordsman
HI Michael, apologies only just seen you post.
email me at firstname.lastname@example.org and I can fire it over
Posted Thu 18 Jan 2018 5.18pm by Mark
I started treatment with 4ft UVB panel about 2 weeks ago. I gradually increased dosage from 1 minute to 6 minutes by now.
Could anyone tell me what would be a target max dosage of UVB for the average skin type?
Is there a certain number of minutes not to exceed or I can continue to gradually increase it throughout the course with no limit for as long as my skin can tolerate it?
Posted Thu 18 Jan 2018 5.44pm by Simon - 63 from Dorking
Had it for years but survived!
I bought http://treatpsoriasistl01uvblamps.co.uk/product/upvc-canopy-with-up-to-9-philips-tl01-narrowband-tubes/
Not cheap but the best investment I have ever made.
I use it standing up (not as illustrated) and I do (after building up) the max recommended which is 2 x 4 mins (i.e. 4 mins "per side"). You need to cover your boy bits in a sock :-)
What I do is count from 1 to 10 in my head and then do a quarter turn (I also cover my face with my hands) - for 8 mins in total (with my machine that is 2 x 4).
The advice I was given was not to to do "every other day" for more than about 10 weeks. After about 8 weeks the worst (it was bad) went away and I was left with a few stubborn patches - tolerable!
Having taken a break for a couple of months I feel ready to restart the treatment - and hopefully my few "stubborn patches" will take the hint!
I also use http://www.mg217.com (which you can buy at various sites).
Good luck with your treatment.
Posted Thu 18 Jan 2018 6.17pm by Mark
Thank you Simon for taking time to pass this valuable info to me!
Posted Thu 18 Jan 2018 8.42pm by tracey
Hi guys, here is an update of my progress.
Bought the 9 tube canopy from mbs. and started using it every other day. So pleased to say my skin is totally clear now. Took about 10 to 12 weeks to get there, now use once and week to maintain
Thrilled with the results.
If anyone lives in the Portsmouth area in hampshire, i will be happy for you to use. Private message me
Posted Thu 18 Jan 2018 9.09pm by Mark
Tracey, may I ask what was a max amount of minutes and how many minutes do you use to maintain? Thank you!
Posted Thu 18 Jan 2018 10.04pm by tracey
Hi Mark, built upto 3.5 mins for treatment.
Now maintaining 3 mins once a week
Posted Thu 18 Jan 2018 10.17pm by Mark
Thank you Tracey!
You probably have Type 1 or 2 skin phototype. Mine is type 3. I already can tolerate 6 min after 2 weeks of exposure. Trying to find out what is my max...
Posted Thu 18 Jan 2018 11.17pm by tracey
Hi Mark, with my unit the max exposure time is 4 mins, so not sure what unit you are using. My unit is powerful and not recommended to exceed the timer Iimitations
Posted Thu 18 Jan 2018 11.29pm by Mark
Hi Tracey, I have Panasol II unit. It looks like it is not as powerful as yours as exposure limit is 10 minutes.
Posted Thu 1 Feb 2018 8.19pm by PamelaP12
I am really struggling to choose the right cabinet. I know where i am getting my tubes from and got a really good price. I just wanted to hopefully ask you Mark does the Panasol unit hold the TL01 6 foot tubes ok? Also does it only hold 4 UVB tubes? I am buying the philips TL01 tubes which are 6 foot.
Sorry for just jumping into this post.
Posted Fri 2 Feb 2018 2.14pm by ambacowling
I am desperately trying to rent a sun bed with philips TL01 narrowband tubes but having no luck! MBS don't have any in stock currently and I can't find any other companies that rent them with the philips tubes. I'm pretty desperate as i'm covered in guttate psoriasis. Does anyone have one that they are willing to rent out? Obviously willing to pay, leave a deposit and collect etc. I'm desperate over here!
Posted Tue 6 Feb 2018 1.17pm by BM
Tracey - I’ve just bought the same unit you have, it arrives on 15th Feb......
I’ve had P for past 15 years, elbows, knees, ankle......
I will update as weeks go by, I had light treatment about 8 years ago and I was completely clear for six months.
I have not got the time to spare to go via NHS so have bitten the bullet and spent £1300 for the unit.
Updates will follow
Posted Tue 6 Feb 2018 2.08pm by Millicent
Hi - BM - snap. I decided to bite the bullet and my unit arrives Thursday 15th as well. Expensive but if I can get rid of this P which is extensive right now, it will be worth it.
I have had P for 30+ years now and during the course of this time had probably 4 sessions of light treatment at the hospital. A few of these were with PUVA baths and UVA light and some with UVB narrowband light.
I seem to remember that with this TL01 light I use it every other day, ensuring that there are at least 48 hours between sessions? I understand that the chappie delivering my unit will be giving all the info, but I too will update the site about changes.
Posted Tue 6 Feb 2018 2.36pm by BM
Every other day is correct, it worked for me years ago - I attended the local hospital three days a week for short periods of time....
I couldn’t face that again, hence the purchase.
Regular updates post the 15th
Posted Wed 14 Feb 2018 4.26pm by Chesterboy
Hi everyone, I’ve just rented a bed for my daughter who is covered in psoriasis, from skin matters. It’s a stand up canopy. She is fair skinned so the recommended start time is 30-60 secs. Is that 30 secs all over or each side?
Also has anyone’s psoriasis got worse before it’s got better? She’s had 5 sessions now and the psoriasis looks redder and has popped up in places it wasn’t before? I don’t think it’s burnt her as her normal skin is fine? She’s regularly moisturising with Diprobase.
Posted Fri 16 Feb 2018 7.04pm by shalimar
Hello. I've been reading this discussion for a bit and my handheld home unit arrived today. I've read extensively on the web for treatment protocols because I am working with a general practitioner rather than a derm for this treatment because of my location and she is uncertain of specifics. My question: how far away from the skin should the bulbs be? I've read a few different recommendations so would appreciate some advice from someone with experience. Thank you.
Posted Wed 28 Feb 2018 10.01am by BM
I got my UVB canopy last week, I’ve done a minute on my front and a minute on my back every other day and have now had 5 sessions.
The Psoriasis on my elbows and knee has changed already, it’s become lighter and has reduced noticeably.
I fully intend to continue for 8 weeks. An expensive outlay initially but the ability to self treat at home makes it a very worthwhile investment.
I’ll keep the posts up as promised - I’m being very careful with the timings and am keeping an accurate record of exposure
Posted Sat 3 Mar 2018 7.01am by PamelaP12
I have been using hand helds for a while which are ok but has its limits. I have done my research and found the philips 6 foot tubes to be the best. Have done my digging around and found the cheapest tubes through psoriasiscare.co.uk but i cant seem to find a cheap bed to suit.
Can anyone recommend a bed for these. I am on a budget so need something cheap. Cant rent one where i am. I am worried about buying on ebay but may have to.
Posted Mon 5 Mar 2018 8.20pm by Sandra
I just got a hand held uvb light. I can not figure what wats to use and for how long it is a narrowband.. First time
Posted Fri 9 Mar 2018 9.57am by BM
I’m two weeks into the home treatment
The initial expense is very much worth it, the ability to use the canopy every other day at home makes it very much worthwhile.
The patches on my elbows and knees are fading now, a small patch on my lower back is now very faded - I’m so pleased
This is the early stage to, I’ll be doing 6-8 weeks, every other day.....
I’m expecting slow progress on the elbows and knees as long term but the smaller patches are already reacting.
Posted Fri 9 Mar 2018 10.02am by BM
I’m following up each treatment with E45 cream - a patch on each elbow and knees, a small patch on lower back and small patch on left calf - hopefully all will continues to improve
I’m up to 1.30 seconds on front and then back.
I’ll continue with updates until week 8
Posted Fri 9 Mar 2018 12.12pm by tracey
Just a follow up.
I purchased the MBS TL01 full canopy for £1360.00 last year, best thing I ever did.
I am still maintaining, and now dropped to 1 min, each side, once a week and still clear.
On another note, saw my dermatologist last week. Whilst they understand why I bought and support my decision on purchasing the unit, they would like me to come off it for 6 months (they don't want me to continue long term use, this is because I have had cancer twice in the past) and have spoken to me about using biologics if my psoriasis comes back severely like before. They have mentioned Stelara injections, which you have every 12 weeks, after the 1 and 4 week starting stage. I have read up in this, and it has good reviews.
So keep going in your journey to rid yourselves of this horrible disease, there is hope for us all.
Posted Fri 9 Mar 2018 1.41pm by Steve
Many thanks for posting this. I've been dithering for a few weeks as to whether or not to buy one of the canopies. I think your post has just convinced me that I should. It's great that it's been so effective for you! (I'm hoping for similar results!)
Thanks again, your info. definitely helps.
Posted Fri 9 Mar 2018 2.06pm by ambacowling
I finally purchased the MBS TL01 canopy at the start of February and it is literally the best thing I have ever spent my money on. My GP urgently referred me to a dermatologist but there was a 12 week wait and I could not deal with not going out for that long because of my skin! I was absolutely covered in guttate psoriasis from head to toe, and in just over three weeks it has faded so much and I'm virtually clear on my torso. I have three/four weeks left of treatment so i'm hoping it will clear up on my legs too, it has faded but not as much as on my stomach/back.
If you have guttate psoriasis and are considering buying a unit - do it. It's expensive but it's worth it for clear skin.
Posted Sun 11 Mar 2018 12.55pm by John
I have suffered with it for nearly forty years.
Treatment at home using professional equipment.
When I returned to the U.K. a few years back I had shipped back a full walk in cabin made by a well respected company in Germany that supplies these machines to hospitals world wide. I had used in Spain where I was living then and although its a hot climate there the machine was the only thing that worked for me. Now I have downsized in the U.K. I want to put this excellent machine to use again perhaps on a shared basis? I live near Tamworth so would need help re siting this somewhere within reasonable distance. I have spare tubes unused and manuals too, I have kept exact records of my treatment times as you would professionally. This machine costed in excess of £9000 ten years ago.
I would love to see other people inc myself be able to benefit from this as I know attending treatments can be almost impossible for some people due to location or restricted attendance times. I welcome ideas as it seems a terrible waste that such a machine lies dormant without anyone benefiting from it, inc. myself. I also have two hand held machines from the same company unused. This is not a commercial venture or intended for anything such as that. Only that I know the relief that it can give used under careful controlled conditions, as I had used it for my own purpose for over three years successfully. Interestingly although the hotter climes of Spain and other countries have helped me a little, it has never ever been so successful as this machine. John.
Posted Wed 14 Mar 2018 3.41am by Allanswife03 (edited Wed 14 Mar 2018 3.42am by Allanswife03)
Hi there, I am new to this, I have had psoriasis now since around October, I got it as a side effect from a medication I was on, anyway I developed it on the palms of my hands and the soles of my feet, it started of very mild but I did not know what it was, I went to the GP on numerous occasions and they kept telling me it was something else, eventually by end of nov early dec. it got quite severe to the point I could not use my hands or walk on the one foot and also developed scalp psoriasis too, I still at this point had no idea what it was, but my GP told me I had dandruff on my head 😠 anyway come January I was told it was psoriasis and scalp psoriasis however by this time my hair had fallen out, it looked like I had severe burns on my feet and hands, I was in such a mess, I kept getting given lotions, steroids creams, coal tar stuff, they gave me everything but nothing worked, I am now on the waiting list for PUVA with absolutely no rush wotsoeva from the hospital, even though my foot became infected, I decided to search for my own creams and potions, I am currently using Vaseline intensive care essential healing as a moisturiser for my hands and feet (well everywhere really) which is lovely and i also found this other cream which is called sorian creme which I have found to be fantastic for my problem, i use this creme 3 times a day, morning, noon and night and inbetween I use the Vaseline intensive care to keep moisturised, I also bought gloves and socks to keep in the moisture, I also recently bought a handheld which I have only used twice at the moment my next session with that is tomorrow, but it seems to be doing the trick, the scalp has been treated with capasan which also done the trick, although I would like to know can using light treatment on your head cause my hair to fall out, I have a comb with my handheld and should it come back on my scalp I would probably use it but if it makes anymore if my hair fall out I shouldn't bother, sorry for the extremely long discussion, it's nice to know I am not going through this alone 😊 I look forward to hearing any replies xxx
Posted Wed 21 Mar 2018 6.17am by Silverfox1703 (edited Wed 21 Mar 2018 6.19am by Silverfox1703)
I have bad plaque psoriasis on my legs which has responded to no treatments except uvb
Hi, I have had 3 courses of UVB at hospital but the plaques would start to come back after treatment finished so I decided to buy a 9 tube canopy from skinmatters in Bristol and use it for maintenance. Currently I am using it once a week but am hoping to decrease frequency over time. The timers only go to 4 mins which is not sufficient for me so I do 6.5 mins each side by 4 mins then 2.5 mins. This is reasonable I think as I was up to 9 mins in hospital and their tubes are 120w.
The nurse in hospital told me last time that they believe the risks with UVB are much less than previously thought as it doesn't penetrate deeply. She said they now have 25+ years experience now with some doing this every year and, in the uk, there hasn't been a single case of skin cancer with people doing this.
I'm very happy with this as an approach for me as I am more distrustful of drugs and adverse effects they can have in the medium to long term.
Posted Thu 22 Mar 2018 1.20pm by Parker
Hello, I posted this on a new thread a few weeks ago, but hoping more people will see it on here :-) ..................
I am looking for a second hand UVB canopy ideally fitted with Philips lamps. Have tried a small lamp but as my psoriasis is fairly widespread over my body (albeit quite mild) I found it very difficult to treat and think a large lamp or canopy would suit me better. Sadly they are far too pricey though!........... Wondered if anyone had one they no longer use and would be interested in selling on? I am in Kent, but willing to travel to collect.
If anyone has anyone one for sale perhaps you could reply to this post and then I'll let you have my contact details.
Posted Mon 2 Apr 2018 11.59am by Barney2201
Hi All, new to this forum... What an amazing source of info.
Question: Dermalight 800 vs Phillips TL01 comparison...
Bit of background-
Had P since a teenager, was on Cyclosporine for years until my derm said no more.... Tried to get biologiques but local health authority said I had to go down the Acetrin route first and prove it did not work. Didn't want to pursue this as spent years pumping my body with toxins only to move to a different toxin, plus the massive amount of blood tests required (really hate needles) and the no drinking thing... Then a change of derm and I fell off the list.
Tried Stelera recently but buying privately, at £50 a can and I have 60% P on my trunk it's getting expensive. It does work well but the P returns the moment I stop using it. Works fine if you want a quick fix before going on holiday but that's as good as it gets.
So to my question... I want to try light treatment and a home machine is the way to go (I travel a lot for business so multiple trips to the hospital every week is not practical). I had one round of treatments about 10 years ago, nothing since. I have the option to purchase a Dermalight 800 for £300 does anyone know how this machine stacks up to the machines using Phillips TL01 tubes? I gather its a full medical machine, however it seems to be older tech. Does this mean anything vs buying a machine fitted with the Phillips lamps. The seller claims its only been used for 8 rounds of treatment so the lamps should be fine. Any thoughts would be most welcome. Thanks in advance :-)
Posted Fri 27 Apr 2018 11.57am by Mike
I bought a 6ft. Canopy with 9 Philips TL01 Narrowband Tubes sometime ago from Skin Matters Bristol.
Superb. After 4 or 5 sessions my psoriasis was cleared. My legs were particularly bad and I was very surprised how well they cleared; pretty much up to the NHS standard. I still get patches coming back of course, but they are manageable.
Largely because my wife wants more space I am selling the light and wondered if anybody would like to make a bid. I paid just under £1300 and would be happy to accept half of that. It's in good condition as you would expect with minimal use.
I live inside the M25 near junction 16 (I think).