Friday, November 30, 2012

Narrowband UVB

My experience of NBUVB treatment:

I check in, get a sticker for the parking ticket, and have a seat. Usually I wait 2-3 minutes before getting called back. The tech asks how I'm doing and makes sure I didn't burn last time. If I did, they'll lower the dosage. I always use room #5 and am currently at a dose of 490 milliJoules, once a week. When I first started treatment I was at 300 mJ 3x a week, my highest dose was 750 mJ 3x a week. This corresponds to treatment times of 0.5 - 1.5 minutes. Considering that it takes an hour total for me to leave the house, get treatment, and get back home it feels a little silly that all that is for (currently) one minute of treatment.

After going into room #5, I strip down, protect my ....(eh hm, down yonder region) with the blue piece of paper provided, sunscreen my nipples, apply SPF 45 lipbalm, put mineral oil on any spots I see, pull my hair up in a bun so my neck gets light, put on goggles, check to make sure I did everything I was supposed to, press the call button, hop into the standup tanning bed, answer that I'm ready, the tech starts the treatment. During my first treatments I wore the face shield, but then my skin started getting darker (and by dark I mean the 2 shades darker than snow and nowhere near pale yet) than my face, so I stopped wearing it. I do wear goggles, but am starting to notice that I have "goggle eyes", so my undereye area is pretty pale compared to my face. I still figure that's better than my whole face looking deathly pale. I keep my eyes closed during treatment, but it's still really bright. At first the heat scared me and felt uncomfortable but now its actually comfortable because I'm cold by the time I get in there so it's nice to feel warm. During my first treatments I would count...one...two....three...four...five... It was comforting to know approximately how much time was left. I don't know when I stopped counting, but I have. I guess I've gotten really good at knowing when one minute is up. I follow my doctors suggestion to turn around and make sure everywhere is getting light like a roasting turkey. When the lights turn off, I wipe off the sunscreen and mineral oil, get dressed, and leave.

For me, my skin gets really sensitive for about 2 days after. I'm pretty itchy and my stomach tends to get pretty pink. I've really burned a couple times. Last week my left side only burned. Several months ago I forgot to mention the antibiotics I was on and got really badly burned all over. Even after regular treatments my skin tends to feel warm for the rest of the day. Certain clothes are more irritating, so after my first treatments, I went out and got soft, slinky clothes to wear post treatment. I've gotten more used to the irritation (don't we all learn to cope with itching and irritation from patches and plaques?), so I don't worry as much about the clothes I wear afterwards.

9 comments:

  1. thank you for sharing your journey, my sister s son newly diagnosed with MF and just started UVB , i like your mentioned details and find it useful

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  2. I'm glad someone could find it useful. I know that when I first started, I had a hard time finding information from the patients side of things. If anyone has any questions at all, please feel free to ask.

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    1. Thank you so much dear for sharing your experience it was really helpful. I hope you will get better always and always to hear good news about you.stay safe

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  3. Thank you so much for what you've written. I'd like to know what happened with you now? Are you just living with it and getting treatment? Are you getting better?

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    1. I posted a new update on the blog not long ago, but to answer your questions, mostly I just live with it. I do tend to get better on treatments, but when I go off treatment, it does come back. It's a cycle that will likely continue my whole life. Currently I have a spot on my lower back and one on my bicep. They've been popping up more and more so I've set up an appointment with my doctor which will be in two weeks, so I'll see what she says.

      Let me know if you have any other questions.

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  4. Does your skin have a "cooked" odor after uvb treatment? My husband has mf and feels the smell stays with him even after a shower. He is down from 20% to 2% after 3 months.

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    1. I've never noticed an odor, but my skin definitely feels "cooked". That's great news about being down to 2%. I remember how exciting it was to have the spots go away and see progress being made.

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    2. Ho dear i was just wondering does things get worse at ghe first couple of treatments? And then it start to clear up ?

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  5. Does your skin have a "cooked" odor after uvb treatment? My husband has mf and feels the smell stays with him even after a shower. He is down from 20% to 2% after 3 months.

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