Incivek and sunlight

[nzkiwilife]

how long can I be exposed to sunlight for and what happens if I stay out too long?
Its a beautiful sunny fine day today and I miss being outside.
(Day 3 and already hate how I'm feeling - if only I could eat more so I don't feel like vomitting at the thought of fatty food, arghhh!)

[heart_in_the_keyes]

Sun can go through certain materials...I like canvas or baseball hats. There is a website/catalog for clothing that blocks the sun but I can't think of what it is. If I find the name I will post it to you.

[nzkiwilife]

Thats what I think too, heart_in_the_keyes.
I would hate to damage my eyes.
I think I burnt my eyeballs and scalp as well as the face the other day. Even though I was out for such a short time. The scalp sensitivity is back to normal now.
So for driving, I'm wearing a big scarf like a muslim woman to protect the scalp and sunglasses. Am looking for some wrap around ones for more protection. Havent had the energy to go shopping and especially not in the sun! but will go to a Mall tomorrow night to have a look.

[heart_in_the_keyes]

Love to wear hats but now look kinda of goofy because even large billed caps or hats I pull down over my forehead to meet top of sunglasses.  My eyes, even when sleeping, in a completely dark room, have light streaming through them. At night I take a black bandana folded down to 2" and tie around my head covering my eyes and this seems to help. Eyes are so photosenitive...even to computers,cellphones,overhead lighting... My eyes tear up if I wear eyemakeup so I basically do not wear makeup anymore...if I have to I carry moisturized makeup/face towelettes and wipe my face on way home and use eyedrops.  Use to wear contacts...don't now.  Of all the senses eyesight would be the worse for me to lose so I protect my eyes. And to someone above....yes...tanning beds are out...they are worse than direct sun.

[nzkiwilife]

Face is ok now. Burning feeling has subsided. I think my eyes got sunburnt!?
The swollen eyelids and face all back to normal but just sore eyes.
Boy, you really have to think through and plan what you do on this tx!!

[nzkiwilife]

nygirl7, I can't imagine 72 weeks of treatment! You must've been so strong to endure that.

[nygirl7]

So is laying in the tanning bed out too then? ."

Like an idiot I tried it once when I was tired of being grey.  Lowest watt bed for half the time. I turned purple. Intron (Interferon) is one of the drugs listed on the back of the tanning room door. I read it as I left.

Bought nice self tanning lotion to use at home after that. I was on tx for 72 weeks and avoided the sun way longer than that. for a tanning freak of all sorts prior to treatment I still do not tan to this day.

[Idyllic]

photosensitivity is not limited solely to natural sunlight, it can occur when using tanning beds, which produce ultraviolet A and B rays. I would not recommend a tanning bed but truly only you can determine what works and what does not.

[brendad72]

So is laying in the tanning bed out too then?

[nzkiwilife]

The swollen eyes seem ok this morning. The tx sx are so weird. They just come and go, come and go like waves. The feeling of my face last night was of burning. Must've been from the sun.  

[working dog]

its common for people to sleep with their eye or eyes open a little bit.....sometimes this can cause a dry spot on your eye....when you you wake up and open and shut your eyes it can feel like something is in your eye... really its a dry spot....often the very top layer of your eye covering can rip off a little as your eye lid can stick to this dry spot.....most times this will clear up on its own...just be real careful with your eyes...stay hydrated...on tx many times in the shower my eyes would burn so bad....during tx i even needed to wear a baseball hat inside the house....your eyes are most likely fine...some folks get lots symptoms while on tx......your doing good asking questions...the goal is svr! ...we aren't doctors here but may be able to help with some insights...stay with the program and you'll learn to deal with the symptoms....hang in there.........billy

[nzkiwilife]

Its not major swollen. I just noticed in the mirror as the skin felt a bit tight. It's been coming and going the last hour or so. The main thing is the dry eyes. Not sure who to contact as there appears to be no medical support after hours. Should I go to the hospital accident&emergency or ring my gp practice afterhours line?

[Idyllic]

I would contact your doctor immediately (as soon as possible) as there is no telling what the exact cause of this swelling is. The timing may coincide with outdoor work but Incivek comes with its own share of dermal side effects that cannot be ignored.


I was able to work outdoors with no problem while taking HCV meds including Incivek. Being able to work outdoors was my salvation while I was treating. Be sure to dress properly as others suggested and stay hydrated and take care of your skin.  I was going to say take it slow to see how your skin responds but at this point as I said I would contact your doctor ASAP.

I am really sorry you did not know this in advance walking in to treatment. It can be hard to work day in and day out at 100% on Incivek and it helps to have alternative plans or support given the potential to have 'off days.'

I hope this all works out :)

[nzkiwilife]

oh dear - I'm going to have a hard time. I own a mini farm with animals that need moving and watering etc. My eyes have been dry all afternoon and I notice I've been trying to blink a lot. After work, I went to property to move stock etc, well covered except for around the face around the sunglasses. Have just had a nap and find my eyelids are swollen and my eyes are so dry and hurt a bit. I am blinking alot. Is there anything I can do for this? Is it going to stay like this for awhile??? I'll have to find a bigger hat than I am currently wearing.

[heart_in_the_keyes]

Taken off tx because liver so decompensated but had 3 other trials which included Interefon and Ribaviran.  The Ribaviran because it does cause photosensitivity played havoc on my skin & eyes. Former sun bunny & life guard..lived on the beach in the keyes..my conch house was 50 feet from the ocean. a bikini w/skirt or daisy dukes were my only daywear....now if I go out in sun I am covered from head to toe...large billed hat or baseball cap with really good sunglasses...it is slowly getting better...last time I took Riba was 8 years ago...it caused rashes and dry skin...even some indoor lighting affected me... this was my biggest fear of going on tx...have just been able to go out in shorts and t's with large hat or baseball cap, good sunglasses and excessive amounts of prescribed sun block.  Actually had a tanning bed that I ended up selling because I couldn't use anymore.  Love the sun...but the sun is also different now then it was 20 years ago...it is more dangerous for everyone & everyone should use sunblock.

[willbb]

Be careful in the sun while on HCV treatmeant,,especially with Riba:

Best ..
Will


http://www.hepatitis-central.com/mt/archives/2009/04/do_sunlight_and.html

Do Sunlight and Hepatitis C Meds Mix?


Sun exposure has health benefits specific to those with Hepatitis C, yet it may be cautioned for those on combination treatment. Knowing about photosensitivity can help you overcome this Catch-22.

by Nicole Cutler, L.Ac.

As one of the many amazing functions we are capable of, the human body can produce Vitamin D simply from its exposure to the sun’s ultraviolet rays. Since researchers have recognized that most people with chronic liver disease have a Vitamin D deficiency, it seems logical that those with chronic Hepatitis C seek opportunities where they can enjoy the sunshine. However, those undergoing treatment for Hepatitis C are at an increased risk of burning from the sun’s rays. Known as photosensitivity, one of the medications used in Hepatitis C combination therapy has been identified as having the potential to heighten sunburn vulnerability.



Photosensitivity
Dozens of medications, both prescription and over-the-counter, can increase a person’s sensitivity to sunlight. Photosensitivity is a well-known side effect that causes some people to:

· burn more easily
· burn more quickly
· get hives or rashes
· have other skin eruptions

Ribavirin
Although it is not categorized as a common medication, the antiviral drug ribavirin may cause or enhance photosensitivity. As an integral part of the prescribed treatment for Hepatitis C, some individuals develop a rash from ribavirin – and this side effect can be exacerbated by exposure to intense sunlight or other UV light, such as tanning beds. In addition, consumers are urged to be aware of the greater potential for a photosensitive reaction when combining ribavirin with one of the above listed drugs known for increasing sensitivity to the sun. For those especially sensitive, a photosensitive reaction may also be triggered by indirect sun exposure, such as light reflected off pavement.

[BoceprevirGal]

  The Ribaviran causes photosensitivity.  I was okay, during my first two months, which were winter months. Then spring came, and I went on a short hike, at a higher than usual altitude. I had a light blue tank top on, and I got a rash on my stomach and back, that looked like red welts. When it dyed down (I had to take a prescription itch pill called Atarax (hydroxizine) I was left with a sun-burn in those places. I had gotten a sun burn right thru the light colored cotton fabric. So I switched to wearing darker colors, a the largest sun-hat I could find, and sun-screen for my neck and chest.
   My arms and legs werent as affected, as they always have a tan on them (I'm in California)  Also, when I drove my car in the hot sun, I would get itchy,or a hot bath.
   Incivek causes an even more serious rash, and once it covers most of the body (blisters, etc) then the Treatment Docotr may make the decision to take you off of the treament Meds, for good.
   You only have one shot at it, with Incivek (tolerance issues prevent re-treatment) so I would avoid sunlight and heat.

[Advocate1955]

Just wear a hat with good shade, cover your skin with light clothes, and wear sunscreen.  Drink lots of water.  Trolleater had a lot of difficulty with sun and rashes, so you might send him a message or a note.
If you can, try to set up a shade umbrella or something if you have to work outside.
It's tough for sure, but it will improve after the 12 weeks on Incivek.
Take care,
Advocate1955

[nzkiwilife]

I feel like a vampire. Its very disheartening as I love being outside and feeling the sun on my skin.
But I will protect it at all costs after reading your replies!

[nzkiwilife]

Ok. Thanks so much for the replies. I need to know as I have outside chores that must be done and no one else can do them for me. Yesterday I went out at 7:30pm when the sun intensity had lessened. I wore an old sheet with a hole cut out of it for my head (like a poncho, haha), akruba hat and sunglasses.Neighbours must've wondered what was going on as I'm normally out in singlet and t-shirt. Its a hassle but its the only thing I  can think of to protect myself from the sun.
Doing these chores is also therapeutic and gives me exercise.
I wore the sheet in the car this morning also, to go to the supermarket.
The sun in NZ is super harsh.
Maybe I should've started the triple therapy in winter!

[barefoot1]

The sun and heat are the worst.  Once you sweat, your pores open up and made my skin feel like it was on fire...then the itching would start again.  Like Pooh, I stayed indoors, lights off, blinds closed, felt like i was in a dungeon.  Sunlight hurt my eyes so bad I had to wear those big wrap around glasses folks wear after cataract surgery (sometimes indoors too)...Be careful outdoors..very very careful.  Good luck

[flcyclist]

"Does it actually have to touch the skin? Are cloudy overcast days ok? "

Although the intensity is lessened, you can get a sunburn on a cloud day in FL.  I wear sunscreen regardless of how sunny or cloudy it is.

[flcyclist]

It's not only the incivek that may cause problems with sun/heat exposure.  Interferon and Riba can do it as well.  I was on Inf/Riba and had some very nasty rashes all over my back that took some time and effort to get under control.  Try to avoid hot showers/baths and keep your skin cool to avoid sweating.  Hopefully, your temps in NZ will make this easier.  

Having said that, I would often go cycling in the hot FL sun since I was stubborn and didn't want to turn into mush.  I'd cover up in sunscreen and go early in the morning to avoid the higher temps, but still sweated quite a bit.  Some people can tolerate short periods of sun exposure, but do be cautious if you're sensitive.  These meds do result in some challenging rash issues as Pooh mentioned.  And they can be extremely aggravating.

The beginning is tough to get adjusted to taking these meds.  Hopefully, you can get into a pattern and you'll begin to get used to this flu-like feeling.  Some days will be tougher than others.  Hang in there

[nzkiwilife]

Thank you for your replies! Very helpful. So I must be serious about the sun thing. A few more question:s  Does it actually have to touch the skin? Are cloudy overcast days ok?

[pooh55811]

I have to agree with Billy (working dog). The sun is not our friend. Neither is heat. If you do go out, cover up your skin with clothing. Don't get too much sun and definitely do not get your skin red or burned.

Any rash that is lurking will suddenly bloom with a vengeance.

Plus, many of us had a problem with bright lights. I know I had to keep the visor down and squint when I was driving. The outdoor light was just too bright.

Another enemy is heat. Heat will also make a lurking rash bloom with a vengeance.

I felt like a mole, LOL. I spent Sept. 2011 through Nov. 2012 mostly in my house with the blinds closed and in a controlled cooler temp. of about 66-68 degrees. I finished treatment on Aug. 25th and I ventured out in Sept. of 2012 for a few hours only to end up with a serious eruption of Psoriasis everywhere the sun hit the skin. That is how I got my profile photo. I looked like a Loris, redness everywhere, especially around the eyes and forehead and face and scalp. I looked so bad I did not even go to the grocery store for weeks. The only place I went was to the dermatologist and she was quite concerned. It is finally under control now, but not totally gone.

As far as the vomiting is concerned, you may want to ask your doctor for a prescription medication. I used Zofran for the nausea. I took 8 mg every 8 hours. It worked wonders and I felt so much better. Don't suffer with that nausea and vomiting. It will only get worse if you don't get on top of it and take something for it.