For years the dermatologists told me I couldn't try it out because it wouldn't benefit me in the slightest and I'm now beginning to believe it. But when you've tried out all available treatments ranging from the steroid creams, wet wrapping, protopic cream, antihistamines, avoidance, hypnotherapy, immunosuppressants etc. etc. it all becomes a bit wearisome and so gaps that have been missed need to be filled, or at least given a go in this case. We are literally clutching at straws now that I've tried out all the immunosuppresants available so light treatment had to be considered even though we knew there would be risks such as contracting eczema herpeticum again, but thankfully that hasn't happened!!!
So I had my first session at the end of January. I was in there for 21 seconds on what I was told was a dosage used for babies. The most horrible part of the treatment is not being allowed to moisturise beforehand. So you're literally getting up, putting clothing on, having your treatment, all whilst feeling absolutely awful and dry and just yucky and bordering unbearable. Of course as soon as my treatment is done, I'm racing home and getting in that shower. Bliss!!
...But anyway, my first session wasn't exactly brilliant. I had my session at 11:30am and by the middle of the afternoon my face felt like it was on fire. It was so tight but I didn't really think much of it. An hour or so later I passed a mirror and saw that my skin was SO red on my face and neck. But it wasn't symptoms of sun burn which is one of the side effects, as my nose was completely unaffected, no, it was my urticaria.
Annoyingly, the pictures I took were on my unreliable phone. So I was in fact at the time, much redder and much more flaky & the contrast on my nose was ridiculous.
They told me not to completely rule out the treatment and to try again the following Monday on an even lower dosage for a mere 17 seconds. It didn't seem to be as bad this time, my face didn't flare like it had before, but the dryness of my skin was second to none. I was having to moisturise my face literally every 5 minutes because the absorption was just plain ridiculous. I've only been for a few sessions and this is still happening now. I'm going through a heck of a lot of creams and antihistamines. The skin on my neck actually wept the other night (all over my bedding, yum!) and is generally sore and so very, very dry.
So this morning I went to see my dermatologist to see what the next step was. I'm now back onto immunosuppressant, Mycophenolate. Last time I took this I was only on it for a week as around this time I had suspected glandular fever, tonsilitis, eczema herpeticum and just generally going through a horrible time. Back then I thought the only way to stop these reoccurring infections was to stop taking the immunosuppressants as they do just as they say, suppress the immune system. So hopefully I'll get some respite this time around!
Has anyone had any success with light treatment? I'm very interested in those who suffer from symptoms closer to my own and how it worked/ didn't work for you? Those who it didn't work for, what did you do next?
I did it. I think the first time was about 7 years ago (I think I have been doing it for maybe 2 years - for few months) and I had a huge improvement in my skin. Obviously, it takes time, it could be months, you have to be very very patient, I know.
ReplyDeleteI did it also last year starting in October, I saw a big improvement in March-April, but after one month it was as before. I think it was better because I was eating better and then I ate as before again. I can recommend you not to eat sugar, my skin is not perfect but with cutting out just sugar I can see a big change, a good change. Use brown sugar or honey instead. And don't eat junk food, it's bad for everyone anyway ;) .
Be patient :)
It didn't help in the slightest in my case I had treatment up to 3 mins 3 times a week for 3 months. It was complete waste of my time to be honest. I was born with eczema but only a little bit on the bend of my arms and knees until April 2011 when it went out of control now i'm covered from head to toe. I've had immunosuppressants, oral steroids, light therapy as well as lathering myself with emollients and potent steroid creams. The only relief I got is when I left London and traveled to Dubai and East Africa. Best three months of my life no medication and no emollients. Literally I would jump in the shower in the morning and wouldn't need to rush to put cream on my skin was perfect and looking normal again. Then I came back and within three weeks I was back on the oral steroids. I couldn't recreate the environment outside my body but I could on the inside. I cut out all junk food and stuck with whole foods, also I cut out dairy (sept 2012) and gluten since January this year. I was also a sugar addict I added sugar to everything, now haven't touch the stuff since last year. Instead I would get my sugar fix from fruits which unlike processed white cane sugar have nutritional benefits. In the morning I would substitute my breakfast with freshly made blueberry and pineapple juice (yum!).
ReplyDeleteI'm not 100% partly due my own faults of sometimes not doing what I should but food plays a big role in eczema suffers. I know this because I haven't had a hospital admission since I changed my diet. I'm currently being tested for cealiac disease and food allergies. Eat clean and drink lots of water/ herbal teas. Hope this helps :)
Mia
My daughter who also has sever Eczema did light treatment for 2 months. For her this made things truly worse.
ReplyDeleteHey,
ReplyDeleteRandomly found this blog and have now read a few of your articles.
I have suffered pretty severe eczema all over my body since birth. Living in the middle of nowhere in rural Scotland I was only ever able to go the doctors on rare occasions and often was just left to try and fend through the pain with moisturisers only. After numerous visits to my regular GP within a few weeks they asked a more senior GP in for a consultation on me. It was at this point that the senior GP basically went mental at my GP for never referring me to a dermatologist.
Anyway, off I went to my dermatologist appointment and I was offered a choice between Phototherapy and Immunosuppressants. Due to the severity of the Immunosuppressants option, I opted for Phototherapy three times a week. I was started at something like 12 seconds, with a 3 second increase every treatment.
I was severely dubious about the treatment at first, but after a couple of weeks a really started to see a huge difference in my skin. As you are only allowed to go on it for 3 month blocks I have been on it twice in two years. Those 3 months are like heaven to me, I get to live a normal life for 3 months and not be in constant pain. After about a month of the treatment my skin would just start to rapidly heal, and even if I had an itching outbreak, the skin would heal so much quicker.
I was allowed to moisturise before it though, there was no mention of this to me, so I don’t know what that’s about. I did also suffer from sun stroke once or twice from it, which wasn’t great, but hey, a goggle sun tan looks great!!!
Due to my current circumstances I have been unable to be on Phototherapy for two years now. I’m counting the days until I can get back on it and have my 3 months of normalcy.
Peter
22yo
I'm babysitting my nephew and he suffers from eczema. I feel bad because it is so dry right now it hurts. I need to get something that I can put on it that will take the edge off at least.
ReplyDeletehttp://www.nwasthma.com/patient-education/eczema