Since having to abruptly end my course of immunosuppresant, Methotrexate, last month due to hair loss, and the fact that it didn't appear to be working, I have been undertaking light treatment therapy.
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?
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