A few of weeks ago I was sent my appointment to see the consultant for my follow up after UVB light treatment last year. After the disappointing consultation previously I decided to cancel this. After years of seeing doctors and follow up appointments after light treatment I knew what the response would be. “Well you’re not severe enough for us to consider anything else so it’s back on topical treatments.
I called to cancel the appointment and followed it up in writing. I explained my reasons, which were the poor treatment, lack of eye contact during consultations, lack of actually examining my skin and total lack of confidence in the consultants at my local hospital. The reply “We confirm cancellation of your appointment”. That was it. Possibly it would be a little cynical of me to think that the same attitude runs through the hospital.
I am glad to say it doesn’t. I have mentioned before that while I was undergoing light therapy the nurses were outstanding. The compassion and empathy they show makes you feel comfortable and at ease. They are remarkably good and getting you to talk about your feelings without you even realising too.
Having had to visit the hospital for a completely unrelated health matter reinforces my view that the poor attitude in Dermatology is not hospital wide. I spent two hours in one outpatients clinic and things ran fairly on time. I had to see a nurse and a consultant separately which was organised extremely well with only a few minutes back in the waiting room between both. There was no rush, lots of explanation and, importantly, eye contact. It may sound silly, eye contact is so important. Would you trust someone who doesn’t even look you in the eye? It restored my faith a little in the hospital and reinforced my decision to cancel the dermatology appointment.
So, what did I do after cancelling? I went back to my GP and we had a chat and after discussing topical treatments we agreed on one batch of a steroid gel to kick my psoriasis in the butt before going back on a mild topical treatment. The side affects of steroid cream cannot be ignored so this will be a one prescription treatment. There is another reason for doing this to calm my skin down, I will be trying a brand new treatment soon which does not use steroids, in fact it doesn’t involve and form of prescribed topical treatment. I am meeting with the company responsible at the end of this week so look out for an update soon.
I should add that I did not have a knee jerk reaction to cancel my appointment. I weighed up the pros and cons and considered if I would be better off going or not. The fact I was due to see the same consultant as before and that even if I asked to see someone else they couldn’t guarantee it on the day it just didn’t seem worth it to me. I do have a GP with a dermatology background which is useful. I don’t want to encourage people to cancel their appointments, please do think about it and consider your options. If nothing else, make sure you cancel in plenty of time so you do not get a bad record.
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Anyone that has been following my progress on light therapy may have seen the improvements during the course. Well it has now come to an end, actually it finished just over a week ago. and so here are the results. I have just put the start and finish comparisons on this post. This is after seven weeks of UVA light therapy. How long it will last, I don’t know. All I know is that I am sleeping, not itching and not sore. It is a liberating feeling.
The marks you can still see are more like shadows of what was there, little reminders as the skin heals. I do still have some patches of dry skin which I keep an eye on and even with skin this clear, I cannot let my guard down. It has been nice to not have to use quite as much sticky ointments and cream as usual though.
Thank you to the nurses at Broomfield Hospital for their care and advice. It has been a difficult seven weeks and I could never have done it without the support of my family, friends, my work colleagues and the nurses. Thank you all.
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Another two weeks have gone by and this is the business end of light therapy. The start is always a little depressing, you hope for an instant improvement but psoriasis is a stubborn old thing and tries to hang around as long as it can but what a difference one more week makes. The photos below show the story from before I started to week 3 and then week 5. The tunnel was dark and gloomy, in fact I thought it was a well and not a tunnel at all. Finally I can see the light. All the itching and soreness of light treatment with a few sleepless nights are most definitely worth it. Add in a mid therapy flare up and one week ago I could have given up on the whole thing. So here it is, one final push to clearance.
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Thought I would do an update on my UVA light therapy as I am possibly half way through. It usually lasts 6-8 weeks and given progress I reckon I will go the full eight weeks. So here are the pictures to compare my starting point to the end of week three. All pictures are in order of before and after, well during I guess is more correct.
You can see that some parts are fading quicker than other but overall there is must less raised skin and it doesn’t look anyway near as sore. Still a little red which could be expected as I am being zapped with intense light every other day. It’s still be a little uncomfortable, going a lighter shade of lobster a few hours after each session and only one session so far where that redness lasted past the next morning. Still leaves me feeling a little sore and warm. Well worth feeling uncomfortable for a few weeks to have the result that I’m hoping for.
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After all the problems with my consultants and even though the last consultant barely looked at my skin, I have now started light therapy. I was hoping for biologics this time as the light therapy, whilst usually effective, is a bit of a pain with 3 visits to the hospital each week for up to the next 6-8 weeks. I am on UVB treatment which means I stand in a box whilst the light does it magic. I’m on UVB which are the burning rays so there is no likelihood of getting a tan, possibly a healthy glow at the most. I have had this treatment before, 3 times before, and each time it has been less effective. I have not cleared so well and a flare up has occurred sooner each time. The last course I had gave me almost clear skin for about six months and even though that isn’t long, when you live with psoriasis, it feels like a lifetime.
My first session was about 30 seconds and today’s was about a minute. As the sessions go on, the time should continue to increase. It’s not an exact science though as it all depends on how my skin reacts. Your skin usually goes a bit pink some time after each session and this should die down by the next day, if it doesn’t there is the possibility that the next session will be reduced or even cancelled. So far I’ve had a little pinking but all feels okay and there is no visible difference as yet, it is very early days though.
There is an added issue this time round which is I have a cold. This creates a problem as my psoriasis often gets worse when I have a cold and if it develops into a coughing & sneezing cold then I will not be allowed in the hospital to avoid infecting anyone else. I am desperately fighting this cold to avoid this.
Whilst I’m on this course of therapy I have to be careful about exposure to sunlight. Luckily there hasn’t been too much sun so far but even on a cloudy day I have to remain covered up or wear factor 50 sunscreen. Even if I’m going to pop down the shops, I have to make sure I don’t expose my skin to the sun. Partly it’s so the nurses can be sure how much light I am being exposed to and partly to avoid burning by overexposure. There is of course the increased risk of skin cancer so all this helps to reduce that risk as much as possible.
I have decided to record the progress of the treatment this time, something I’ve never done before. Below are photos of some of the worst affected areas of my skin which I’ve edited to avoid showing off my flab. It is really strange looking at the pictures in full, especially of my back which I don’t see very often. I didn’t realise until tonight how much of my back was covered, you could play dot to dot on it. So this is how I look now and I will be posting updates as the weeks go on.
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