2 weeks after photo therapy flare up again

Posted Sun 28 Mar 2021 17.53 by Heavensent

I can’t believe I’ve just been through 28 phototherapy UVB sessions and it’s only been two weeks I was basically clear and within just two weeks it’s all starting to come back I can’t go back to where I was in December! I have read that when you finish your treatments it’s advisable to have weekly top ups to stay on top of it. I am now at the point of desperation and I am considering purchasing a lamp for myself but I’m worried about the risks involved would it be okay to just do it once a week just to stop it coming back or should you only have a maximum I don’t know what to do please any advice would be so welcome I’m sure there are lots of people suffering in the same situation as me 😔 I initially only had plaque psoriasis on my left elbow, but in March last year I broke out everywhere gutate over my torso & buttocks arms legs private parts scalp omg basically everywhere. I Started with all different topicals nothing worked but the phototherapy was amazingly took commitment 3 times a week for a few months and lots & lots of moisturiser 🙈 thank you so much for reading my long post 😇

Posted Sun 28 Mar 2021 18.00 by scarletsmummy

a few years ago i had intensive UVB and PUVA sessions at the local hospital and it did seem to clear it from my body ,however within a few weeks it was back with a vengeance and i was beside myself i did however purchase a UVB lamp which although was not at hospital strength it did keep it under control Having had Psoriasis for over 30 years i am aware there is no cure for it only slight relief,I have tried all the lotion and potions on the market ( and the black market )You willbe perfectly safe to use it once a week but do your research as to where you purchase it from and make sure it comes with full instructions Good luck

Posted Sun 28 Mar 2021 18.52 by Heavensent

Thank you so much for taking the time to message me! I am so sorry to hear you have had to suffer for so many years my heart really goes out to you ❤️ Do you still use your lamp to try keep it under control? I was initially going to get a hand held but it would take forever can you recommend any at all? 😇

Posted Sun 28 Mar 2021 19.03 by scarletsmummy

I am managing to keep my Psoriasis under control and my real problem area was my scalp and having shoulder length hair does not help as any lotions and potions do not really have any effect on it ,I did have a hand held one to start and i used it every day on the base of my scalp but i think i would have had to keep that up till eternity but i did manage to borrow a mini unit and had it for about a year until the owner moved abroad and took it with them and i found it did ease my worse part which were my Knees and my Bottom , i am basically clear at the moment and i contacted the doctor weeks ago as they seem to forget you unless you keep badgering them and he gave me a lengthy telephone consultation and prescribed Elecon Lotion which i had never had before , i have been using this lotion for less than 2 weeks and already my scalp is almost clear and it has done more than any of the greases and potions i have used over 30 years .I hope you find something that eases your skin

Posted Sun 28 Mar 2021 22.04 by Moggy1

I am so sorry light therapy hasn’t worked for you as I have read so many positive stories about this treatment , you were lucky to receive it as my local hospital hasn’t offered the treatment since the covid 19 pandemic started and can’t say when they will start again. I have been waiting 18 months now and am being pushed to start down the medication route which I don’t want to at the moment.. Keep positive home treatment works well for lots of people but please be careful as burning can be an issue. Hope you find something that helps x

Posted Sun 28 Mar 2021 22.08 by Moggy1

Sorry I forgot to say have you tried contacting the hospital again they might offer some additional sessions

Posted Mon 12 Dec 2022 12.06 by Sarbie

Hi Mogg1, Heavensent and scarletsmummy, I know your posts are from over a year ago but I was wondering how you are getting on now? I recently purchased a UVB unit and became clear after 5 weeks. I also have found after 2 weeks that very small patches might be returning on arms legs (previous had in all areas). I had a hospital appoint and they confirmed I was clear but advised to keep using for another 3 weeks. I stopped through as I think the time was too long (3.5 mins) and was making my skin a bit red bit not sore. I have spoken to the company I bought it from and they have said to start again from the beginning (50 secs) as others have also experienced this. I just wanted to ask if you are still maintaining your condition with regular top up sessions? I have read on a number of NHS websites that they only start to be concerned about sessions once you have had 500! Caroline

Posted Thu 15 Dec 2022 18.55 by Mervyn

I have been seeing the psoriasis nurse regularly now for a couple of years and she has just passed me over to the consultant who wants to try photo therapy treatment. I have read the posts but would value advice fro anyone who had this treatment and how effective it has been

Posted Thu 22 Dec 2022 11.16 by Instantsmile

Hi we have not been on line for some years the visitors uvb light treatment worked well untill covid 19 it flared up now my wife is on acltretin for about one month it is improving treatment is for life she is getting use to the side effects

Posted Thu 22 Dec 2022 11.44 by Sarbie

Hi Mervyn, I would definitely go for the light treatment. I was on a very long waiting list and so decided to purchase a 5 tube unit for use at home. I did a lot of research first including on this forum. There were several positive reviews for a company called MBS and so I contacted them. Roy was really helpful and not a pushy sales person either. He provided me with a lot of information and the company has been going for 15 years. I can call them whenever I have any questions. It is working for me and so mentally it has made me feel so much better. All the best you you. Caroline

Posted Tue 27 Dec 2022 17.27 by Yacht

Yes, that is the biggest problem with UVB light therapy. When the UVB stops, the psoriasis restarts. The best way to keep UVB "topped up" is to buy a whole-body cabinet and do a few seconds per week. But they cost £5-8k in 2023 and are not cheap.

Posted Tue 27 Dec 2022 17.50 by Sarbie

Hi Yacht, why do you need to get a whole body cabinet? Can you not just get a 5 or 9 tube unit and do half or quarter turns in a weekly session?

Posted Tue 27 Dec 2022 18.38 by Yacht

Hi Csarbs, The 5- or 9-tube "canopy" units are slow, boring, a pain to target on specific spots, and take forever to use. If one is having to zap (say) a spot on the back, a spot on the stomach, and a spot on the outer thigh, that means 3 turns in a canopy. If one uses a 24-tube whole-body "cabinet", for those three spots, it means just "one and done". Strip off, step in, stand in a star-shape for a few seconds, step out. It is -67% faster and easier. That means much higher "compliance" , much less dropout, and a much higher chance of keeping the P at bay over the long term of (say) 5+ years (check with a doctor first). * UVB wand = tiny + partial coverage * UVB canopy = medium + partial coverage * UVB cabinet = big + full coverage + faster + easier + much higher compliance

Posted Tue 27 Dec 2022 18.54 by Sarbie

Hi Yacht, Unless you are having treatment on NHS it is only the lucky few who are able to afford several thousands of pounds for a whole cabinet. The maximum time per side should only be 3 or 4 mins so if it takes 10 mins 3 x times per week it's worth it for me. I also have a hand held unit which I use as well.

Posted Tue 27 Dec 2022 19.00 by Instantsmile

Hi in our case a 24 lamp uvb cabinet was two expensive and required two power supplies and a separate room .the smaller units 5 or 9 lamp could be stored in a corner ( they say it could be stored under a bed not the type with storage underneath) and used over a bed .any way take care

Posted Tue 27 Dec 2022 19.16 by Yacht

Yes, totally agreed on cost. It is £1-2k vs. £5-8k. But you get what you pay for, as they say. A UVB canopy is an absolute pain to use. Dropout rates are high. If you have to keep shuffling the tubes around to a new position, never fully certain whether the full light is hitting the right spot, twisting and turning several times per use, for 20-50 weeks a year, a partial canopy soon becomes an absolute ball-ache. With a full UVB cabinet, you step in, you step out. Done.

Posted Tue 27 Dec 2022 19.23 by Instantsmile

Hi we put ours up in the spair bedroom mounted vertical I operated the controls and set the timer for the patient it involved turning round 45% this was not a probem for her

Posted Wed 28 Dec 2022 14.13 by Yacht

A partial canopy is awkwarder, slower, takes longer to use, and is less accurate for zapping hard-to-reach spots. There's a reason why hospitals almost always use full-body cabinets...

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