UVB treatment at home...
Posted Thu 18 Jan 2018 23.29 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.
Thank you!
Posted Thu 1 Feb 2018 20.19 by PamelaP12
Hi everyone.
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 14.14 by ambacowling
Hi everyone,
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!
Thank you.
Posted Tue 6 Feb 2018 13.17 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
BM
Posted Tue 6 Feb 2018 14.08 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 14.36 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
Good luck
BM
Posted Wed 14 Feb 2018 16.26 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 19.04 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 10.01 by BM
Hi all
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
BM
Posted Sat 3 Mar 2018 07.01 by PamelaP12
Hi Everyone,
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.
1
Posted Mon 5 Mar 2018 20.20 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 09.57 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.
BM
Posted Fri 9 Mar 2018 10.02 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
BM
Posted Fri 9 Mar 2018 12.12 by tracey
Hi People,
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 13.41 by S.
40years
Hi Tracey!
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 14.06 by ambacowling
Hi,
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.
Amba :-)
Posted Sun 11 Mar 2018 12.55 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 03.41 by Allanswife03 (edited Wed 14 Mar 2018 03.42 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 06.17 by Silverfox1703 (edited Wed 21 Mar 2018 06.19 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 13.20 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.
Many thanks
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