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80575 tn?1207132364

Photosensitivity for VX950 rash?

The VX rash from hell was bad but manageable.  

Last summer, about two months into Prove 3 tx, my family was camping at the lake.  I was swam and fished in the hot sun for most of the day.  At dinner I noticed my arms itching and within an hour were covered with a rash that looked like poison oak or sumac, which I thought was what I had.

When we got home from camping the rash started to get angry and moved around to/from different parts of my body.  This was when I knew it was tx-related.

My doc prescribed steroid cream.  At first they prescribed 8 oz. tubes when in reality I needed a hand pump because it spread from my shoulders down my back, buttocks and back of my legs.  Odd but never on my face.

After 2 weeks of constant steroid cream and absolute sun avoidance, the rash went away.  For the rest of last summer I stayed out of the sun as much as possible, mowed grass and gardened in the early AM or late afternoon with UV long sleeve shirts/pants/hat.

My question is about this summer.  I stopped taking VX950 about mid-July of 2007.  Does anyone have data about how long the photosensitivity will last?  Will I experience photosensitivity this summer, which we are planning a beach vacation?

I've not seen any information on the subject.

Thanks,

miked
5 Responses
Avatar universal
If you remember me aka Mary55....I was taken off the Prove 3 due to rash also. But the good news is that I'm here in Panama enjoying the the hot weather of 85-90 and I'm having no problems whatsoever. Enjoy!
80575 tn?1207132364
I'm booking our flight today!  Thanks.
Avatar universal
I don't have any data on the photo-sensitivity of the telaprevir, however I have been taking it for the past 12 weeks (I take my last 2 pills in an hour!!!).  During this time I've been having an extremely itchy rash (which did NOT occur during my standard tx) - but it has subsided greatly (I felt more normal by around week 10).  I'm still a little itchy, but I just started tanning last week to get ready for a trip to Mexico (yes I know its bad for me!)  I'm fine so far.  I also took a couple of trips to the Carribean while on SOC - even though the ribavirin alone can cause photo-sensitivity...I just eased into it so I wouldn't burn.  Don't stay in the sun too long and use plenty of sunscreen.  I would imagine that since you've been off the meds completely, the photo sensitivity won't be an issue, but that's just my opinion. I guess there's only anecdotal data on that subject.  

(And you may not give a fig about the opinion of someone who visits a tanning salon while on triple-therapy - LOL!)  Have fun at the beach...I know I will!
80575 tn?1207132364
Thanks for your comments.

Seriously, be cautious with the tanning and sun with VX950 inside your skin.  

Everyone's different, right?  For my first two months of VX950 I was OK gardening, mowing, fishing,swimming in a pair of shorts no shirt.  One day I got this rash starting on my arms then appeared on my shoulders to my heels.  It was really angry but calmed down after 2-3 weeks of constant steroid cream.

I'm obviously cautious because I'm asking the question at approximately 38 weeks after taking my last dose of VX950.  I don't want the rash back.

When you take your last two VX950 pills, are you then off of tx altogether or continue with SOC for 12-24 weeks?  Also were you taking Ribivirin with the VX950?

Enjoy Mexico.  We're looking at Cabo and some places in the Caribbean.



Avatar universal
I am being careful - thanks for your concern.  Actually that's why I try to get a base tan in the first place...because I don't want to burn.  I know it would be better if I just stayed out of the sun altogether, but I don't want to be stuck inside.  So far so good!

I also had a rash starting on my back around week 3 which then moved to my chest, arms and legs.  It's mostly cleared up but I still have some itchiness...mainly on my arms.  I started using steroid cream but my Dr. actually advised against using it.  She was concerned about the steroid being absorbed into the bloodstream, so I basically just used moisturizer and drank lots of water.  The occasional antihistamine helped also.  Obviously my rash is nothing compared to others around here, so I consider myself very lucky.

I'm off the vertex now, but I still have 12 weeks of SOC to go.  My first round of tx was 48 weeks of SOC, and I relapsed at 11 weeks post.  So I'm a little concerned that this round of treatment won't be long enough.  

Since your last vertex pills were 38 weeks ago, I don't think you have to worry about photo-sensitivity related to that!  I don't believe the vertex stays in the system as long as the standard meds (at least from what I've read).  

Good luck with your skin and have a great trip!
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