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.
Thanks
3Posted Tue 4 Dec 2012 10.11 by TimA Plaque psoriasis over most of body: especially shins, elbows and hands.
Hello jamief.
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 11.35 by jamief 10 years...
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 14.18 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 11.23 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.
1Posted Sun 14 Apr 2013 15.53 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.
11Posted Sat 24 Aug 2013 11.22 by vstable (edited Mon 25 Aug 2014 15.09 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 14.02 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.
Thanks
Posted Sun 17 Aug 2014 13.05 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 17.04 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 17.43 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 12.14 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 06.47 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.
1Posted Fri 11 Dec 2015 21.33 by apatel1 (edited Thu 7 Jan 2016 17.36 by gillfeb77@aol.co.uk) 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 17.37 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
11Posted Sat 9 Jan 2016 17.35 by JKClements I have scalp Psoriasis, also on my elbows and I've had guttate all over my body previously.
Hi everyone,
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.
John
clements@verdion.com
07970 230 381
Posted Mon 11 Jan 2016 09.29 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.
Thanks
1Posted Wed 30 Mar 2016 20.06 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 08.47 by TimGuyUk I have it. Head, arms, legs, body. Tried everything failed. Here to discuss UV light
Hi
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?
Tim
Posted Thu 23 Mar 2017 19.05 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.
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Posted Mon 3 Dec 2012 17.13 by jamief