Dovobet and light treatment
Posted Wed 24 Jan 2024 10.29 by Kaz141
Hey, I’m new to this forum so it’s my first post.
I’ve had psoriasis since my teens and 37 now.
It’s ruined my life in a lot of ways, I try to stay positive and think could be worse but only other psoriasis sufferers will understand.
Firstly my gp has kept me on Dovobet for about 20 years now. Has anyone been on it for this long and is it negligent, I’ve seeked other options in the past but just told me to stay on it!
I have finally been put through for light treatment as guttate psoriasis is pretty severe and covers my whole body in spots apart from face and neck.
Did it work for you guys and how long did it take?
I also have light brown skin and worry about tanning and hyperpigmentation as it’s something i already have.
Thanks in advance for any advice or shared experiences.
Kaz
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Posted Wed 24 Jan 2024 12.57 by Kaz141
Nope, wanted to use the word seeked - even though it’s not a word.
My choice you will find.
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Posted Wed 24 Jan 2024 16.13 by GoddersB (edited Wed 24 Jan 2024 16.13 by GoddersB)
Still not a word you'll find, thus incorrect.
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Posted Wed 24 Jan 2024 16.44 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
@Kaz - I'm surprised that your GP has kept you on it for that long. Usually there would be a consultant review? As with any steroid long term use needs to be monitored and reviewed.
As to UV treatment I would trust the nurses, they have a lot of experience.. They'll do a patch test to work out the right starting dose and because you'll see them twice a week it's easy to follow up on any issues. That test will also mean that the doses are set correctly for your skin type/colour.
Personally I had an unexpected burn from hand and foot PUVA and it was very unpleasant for a few days (but no worse than really bad sunburn - and no worse than psoriasis). If it works though it will be worth it. Also if you're under the NHS and it doesn't work it means you'll get moved onto other treatments such as Methotrexate/Ciclosporin or even biologics.
Best of luck and if it helps remember that you'll be talking to nurses rather than doctors/consultants and they're often friendlier and open to discussion (and a cuppa!). They will take good care of you.
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Posted Thu 25 Jan 2024 06.53 by CBMan (edited Thu 25 Jan 2024 06.55 by CBMan)
Ten years is a long time to be on the same medication, a lot of people seem to benefit from rotating through different options.
It is not without risk though. I had been on Sulfasalazine for years to treat PsA and my Rheumatologist thought I might benefit from trying Methotrexate - failure. It didn't work at all on my PsA (I was in constant pain after being nearly pain free on Sulfasalazine) and it upset my bloods badly. Although it did seem to improve my plaque psoriasis I was off it within six months.
My experience of PUVA was really good.
The treatment was 30 sessions (3 times a week for 10 weeks). That is quite intrusive, so if you get to choose what days and time of day your treatment happens, think hard about it. In retrospect doing it during the winter would have been easier - wearing long sleeves and avoiding shorts during what was a very hot summer was quite hard.
I started on what seemed like a low dose (about 30 seconds), building up slowly to about 6 or 7 minutes by the end. Before each session the nurse would check to see if there was any reaction to the previous dose and ask me if I had felt any soreness/burning. When I did report tenderness (a couple of times) they would hold the dose steady for a session or two before starting to increase again.
It was about 10 sessions before I started to see improvement and after that it was steady progress to being nearly clear by the end.
I was told the hyperpigmentation would fade over time and that seems to be happening. It appears less obvious now (about six months after the treatment finished).
Posted Tue 30 Jan 2024 18.33 by Georgiat
I had light treatment as a youth after years of using steroid creams which only cleared me for a few days then was back up again, the light treatment cleared me for around 5 years until I had my first baby food luck
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Posted Tue 30 Jan 2024 18.41 by Kaz141
Thanks all for your responses.
I know we can’t guarantee the same responses from treatments but it has made me feel a little more confident about just giving it a try and see how it goes.
I think it’s easy to give up when you don’t see any improvement but will finish the treatment and see how goes.
If the pigmentation does last longer it’s something I’ll have to just deal with.
And it’s true, if doesn’t work then they can look at what to try next.
Yes I have been on dovobet for so long - I am worried what will happen when I do finally gradually come off it but hopefully can move towards some clearance finally.
It is a dream of mine to be psoriasis- free again (or nearly at least)
Maybe this year is the one 👌🤞
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Posted Fri 2 Feb 2024 15.13 by mt382 (edited Fri 2 Feb 2024 15.16 by mt382)
I did NB UVb about twice a year for 10 years (home unit). (Obviously, I took on the risk associated with that).
At first it was superb. Cleared me during and then for a month or two after.
Over time, it came back with more coverage and I staryed having guttate explosions between. I suspect that the damage caused by the UVB (I wasn't burning, but all UV causes damage) was triggering psoriasis.
If I hadn't done it, I would have been on methotrexate from my early 20s. I've avoided ten years of that stuff, and that's the reason why it sits where it does on the treatment ladder.
I hope you get the course done soon! In ny early psoriasis years it was a god send
Being left on steroid is just a sad truth of the state of dermatological treatment in my country (UK). I don't think you'd win any battles for negligence but its sad that patients themselves have to advocate for themselves and actively week further treatment
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Posted Fri 2 Feb 2024 16.25 by Ryan
Hi, i have had psoriasis for about 15 years now and it was ok to start with but in the last 6 months had gotten so out of control it made me very conscious and i never show my arms or legs, my scalp got bad too
My GP kept me on Dovobet for many many years and got immune to the effect i think, i have last year been suffering really bad and nothing seemed to be helping - think it was also due to an op i had to remove gallbladder
since going back to docs they originally changed my dovobet to diprosalic but think this made it worse so went back and now i'm on a regime of Betnovate cream in morning then a calcipotriol ointment in evening (thats a Vitamin D ) within a week scales were gone - patches where plaques were remain but i hope they will becomes less noticeable over time, they have gone lighter at least - I also now use a sunbed once a week too - and have not drunk alcohol in 5 weeks
for scalp i use oilatum shampoo been amazing and they also prescribed me betnovate scalp which has removed all and my scalp is best it has ever been
has anyone else used this plan or something similar and have success stories, do the plaque marks go? does your skin go back to normal colour etc?
Any advice is welcome
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Posted Fri 2 Feb 2024 19.08 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Diprosalic is pretty hardcore! Usually used on thick areas of skin to break down the plaques..I had it prescribed for my feet and it was like it was dissolving stuff in a couple of hours.
I used Enstillar,,(Calicipotriol and betamethasone) and it resolved thick plaques in about a week. The red patches it left behind are slowly fading. I think a decent summer and they'll be gone. Be careful with the sunbed use.
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Posted Sat 3 Feb 2024 10.11 by Steview
A P sufferer for over 30 years, through good and bad times.
I have been prescribed dovbet for over 30 years. Thankfully the last 15 or so years use very sparingly as other treatments have cleared most of my P. Dovobet is the only topical treatment other than dithranol in my teens that has been effective on main parts of my body. Scalp treatments and the likes trimovate also work for their spefic areas when required.
Light treatment NUVB, I had 2 treatments of 30 sessions in the late naughties. First one great, cleared for about three months then second treatment failed, ended in massive flare.
Light treatment can be great for some but invariably P will return sadly and ba k to square one. Usually alternative treatments are investigated at that point. Good luck
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Posted Tue 27 Feb 2024 20.03 by Kaz141 (edited Tue 27 Feb 2024 20.04 by Kaz141)
Hi,
Thought I would update as been interesting to see lots of other people’s journeys.
I started the light therapy and tomorrow will be my 7th session.
I’m still on less than a minute, no burning or anything yet as still quite the low dose.
I’m not seeing any changes yet, the average seems to be 10 sessions minimum before people tend to see a difference.
A lot of mixed reviews on it.
Skin was little itchy but try to moisturise with double base gel straight after and daily as does dry your skin - which with psoriasis you don’t want.
I did come up with a bit of a red rash on arm that went purple but is fading. Nurse was not worried.
It is a lot going 3 times a week I have to make the time up those days at work - but will try to keep going and see it helps.
I am worried won’t work and would have wasted time but if don’t try will never know.
I will update again soon for those looking for info on this like myself.
*Also thanks for all the responses above, very interesting to read.
Posted Wed 1 May 2024 20.01 by RachelVictoria
Hey Kaz
I’m 31 and have had plaque psoriasis pretty much my whole life
Light treatment is amaze but i hear you about pigmentation and obv it cant be continuously done
For around 15 years dovabet (gel) was the only thing that ‘kept on top of it’, but as i’m sure you know it’s relentless, because its a steroid your skins becomes reliant on it.
I was in a cycle of using this for a few days in a row (everywhere!) having a few days ‘clearer’ and then having to start using it again. Relentless never ending.
Of course maybe speak to your doctor first however i took it upon myself to go cold turkey, NGL it got worse it was a rough few months but now i only ever get it on my face & elbows.
Its not perfect at all! I’m still working on the best moisturiser and cleansers that work for me, but only change one thing at a time and try if possible to manage it other ways to steriods long term is a huge recommendation
Hope this helps
Steriods are a great effective quick fix but please please get off it after this length of time xxx
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