Extreme Sun/Light Sensitivity

[jmjm530]

I noticed this problem last Spring/Summer, but it's starting to come back in spades as Spring is upon us.

I'm not talking about sunbathing at noon during the summer.

Yesterday, for example, I was only out in the early morning sun for perhaps ten minutes -- wearing a baseball cap and number 30 sunscreen. Face got completely red.

I'm even starting to wonder if it could be light as well -- such as the florescent lighting at the gym.

Been on some topical meds for psoriasis which may be contributing but I've stopped all those for now until I can sort this out. Or maybe the sun isn't actually burning, but inflaming some skin condition. Dunno.

So wondering if else experiencing this extreme sort of sun or light sensitivity while treating or after? If so, how long did it last after your stopped the treatment drugs. Any suggestions welcome as sunscreens don't seem to help, possibly even irritate.

The way things are going now, either I'm going to move in with Ice Boy where they don't have much son, or join the local Dracula club :)  Of course, the upside is I can get a decent tan in about thirty seconds :)

-- Jim

[Paris47]

Good question, I was out yesterday for no more than 15 minutes,
and it took my eyesight over 20 minutes to adjust when I came back inside...any connection?

[lilmoma]

My doc told me to STAY OUT of the sun, that this tx makes us very photosensitive. I have done just that. Sometimes my job forces me outside, and I feel myself becoming very weak very quick. I dont know if it is the heat or the sun or both.
I used to love to get my little suntan.
lilmoma

[strator]

I too was told I might get photo sensitive. My first 2 weeks of tx (Sept)I was working outside in the sun and did notice getting a little dizzy and headaches. Hard to judge if it was the sun or the body adjusting to the meds, maybe dehydration. of course since than the sun hasn't been as close but I do notice on bright days if I'm working outside I actually sseem to get red rather fast though it goes away without a burn. I'm wondering how it's going to go this spring and summer. Might actually have to start wearing a hat.
My eyes were always sensitive to the light9since an injury 30 years ago but are more so now. I find myself wearing shades to drive,or pulling drapes over somedays.
Be Well,
Don

[DoubleDose]

As you may remember from several of my recent posts over the past few months, this is a major problem for me now.  After two and a half years since finishing tx, I am INCREASINGLY sensitive to the sun, and seem to have a Lupus-like reaction to it.  My cheekbones get bright red patches, and somewhat across the bridge of my nose, and the rest of my skin gets red, and burns easily.  The worst part is that I also get systemic reactions to the sun, and after minimal exposure seem to have joint pains for several days, fatigue, feverish feeling, digestive problems, and eye problems.

This seems to me to be more of an autoimmune issue, which according to the literature is often triggered by sun exposure....see articles on Lupus, etc.

I really think we have developed a sort of Lupus-like autoimmunity from all the interferon.  See how you feel for several days, after sun exposure, this summer and see if you also find a correlation to other physical symptoms.  I have really been able to see a very close connection, especially this year.  It seems worse than last spring!  I used to LOVE the sun, and tanned well, and always felt BETTER from the sun!  I do not like this reaction at all.  

DoubleDose

[NYgirl]

Yup I can feel it when I've got my car window open a little bit burning on my face and have to close the window even. For a sun worshipper like me this bodes bad - I guess I'll have to get that tan paint look going on this year hahahah.  Orange with bumps and clumps of hair missing ought to be all the rage.

[lilmoma]

My hubby drives for a living, and just the sun beating on his window arm causes major problems.
lilmoma

[amirtracy]

jim, i was just talking about this! I was outside for 5 minutes and my arms and face are sunburnt. I live in florida. this is a first. i couldn't figure it out....

[jmjm530]

Thanks for sharing your thoughts. Since I appear to have a few other skin conditions magnified by the treatment drugs it's hard to know if it's simply a simple sun reaction or the sun inflaming another condition. I'll probably check it out further with a dermatologist.

DD,

It will be interesting to see what happens this summer given ten minutes in the Spring sun with 30 stength sun lotion gives me a burn. Have you been to a lupus specialist or dermatologist regarding your sun sensitivity and related issues? Best derm site I've found on the net is New Zealand Derm Society http://www.dermnet.org.nz/
Good search engine and lots of pictues so you can match up what you have with the various conditions. Sorry you 're still having all these problems post treatment. I know you and many others had no choice but to treat given your stage of damage. But getting the message out that the treatment can potentially be worse than the cure is important so folks can make an informed treatment decision and go into this with eyes wide open.

[jmjm530]

LilMoma,

Maybe this will help hubby. Also, a good assortment of sun gloves, hats, etc
http://www.coolibar.com/01005.html

Here's another site for sun protective clothing. I think I've seen this fellow on the news "shopping" in a 7//.
http://www.burfish.com/catalog/3384.html

[lilmoma]

I am not gonna tell you what hubby said when I showed him the pic of the man with the sun mask on.
I would sweat to death in something like that!!!!!!!!!!
lilmoma

[jmjm530]

LOL. You mean the white one? Yes, that one is kind of extreme but I may order one anyway for like swimming in the ocean. What I had in mind was the removable sun sleeve and sun gloves for his arm near the car window.

[lat36]

Hi Jim, hope post tx is treating you well. I got dealt to by the sun down here (NZ), apparently the UV is about 40% higher than the same latitude in the northern hemisphere due to the ozone hole. Spent about half an hour in the sun, in shorts, ended up with sunburn/riba rash on legs, was an interesting look but very irritating. We're in autumn now, going into winter, I found the sun over summer felt much harsher than usual, seemed like arm was burning just driving the car. Joining the end of tx club very soon, last shot tonight, week of riba after than then game over. About time. Best of luck for your SVR.
Regarding relapse - I often read that it's most likely to happen in the first month, that true?

[GoofyDad]

Holey Cr_p, Jim! That <a href="http://www.burfish.com/catalog/3384.html">would look like you were morphing into a moth</a>!! Add a couple wings and you could join the caped crusaders. Batman, Robin, and Mothman!

Sorry you're having to deal with these sun exposure issues. Same goes for DoubleDose. That's something that would be a hard adjustment for many of us. Best of luck.

[fishdoc]

I'm sure you read my post above about my chest.  According to the can man, I have to wait for chest hair!!  But, I actually did some lupus searches, worrying about that issue.  I had antibodies that could be associated with lupus (antismooth muscle and antinuclear, I think, but was just borderline), before treatment, so when my neck started burning and tingling, I of course started worrying.  Normally, I live outside, (probably the reason I look 60 instead of 50!!), so this is not making me happy either.  106 degrees in a long sleeve turtle neck does not sound good.  What I found indicated if its treatment induced lupus, it resolves after treatment..

BTW, never responded on the sunscreen: have you tried oil of olay complete?  my hubby has skin sensitivity issue (polymorphic light eruption), and he uses it too... for your face its certainly lighter than most sunscreens...

[dyce]

Sorry to hear your delema , you all ready have enough on your plate beein a fishdoc and all. How are your sx's, the shot I took on fri. is kickin b-tt?

Dyce

[fishdoc]

Hey there, wondered how yours was coming.  Today am was good, pm I'm dragging @ss.  Need a wheelbarrow and a flunky to haul it for me.  Worse week so far was after a week in Lubbock, I am anxious to see how this week goes after being gone all week.  If I need it, I still have a day coming for my birthday.  Plus, we are dealing with huge tax issues (at least for us!!), as in we finally had to threaten our tax person so she finished our 2004 taxes, we owed $3400 before all the interest and penalties, she didn't figure my Georgia state tax for two years, so we are scrambling looking for a little bit more responsible person.... she just wouldn't answer her phone.  Finally had to go bang on her door...long story still long, I may take a day off to dig up three years of crappola...

hope yours gets better from here, but I'm with ya on the sunday/monday issue.  Makes me wonder if I should do thursdays, work friday, then have two days to recupe...

so what is this nioxin stuff?? is it prescription??  whats up with that??

[jmjm530]

Lat,

If you stay negative the first month, you have a 90% chance of SVR. Negative by month 3 and it goes up to around 98-99%. About the same for month 6. Negative at one year and the odds of SVR start to approach 100%
-----------------------------------------------------

CanDo says: it off before you go into the bank.

Cando, let's not be a fashion fashista. Frankly, I think it's kinda a clean, summery look. Wonder what the ladies think?
----------------------------------------------------------
Goof says: Add a couple wings and you could join the caped crusaders. Batman, Robin, and Mothman!

Actually I was thinking
Actually I was thinking of painting V's (from movie of same name) likeness on it.
http://vforvendetta.warnerbros.com/img/mask_news.gif
I mean...who gets all the girls --
V got Nataline Portma
Spiderman got Kirsten Dunst
Batman got Kim Bassinger
And Robin, got, er, Batman.

---------------------------
Mothman, eh...anyone from Warner listening ? Actually I see Mothman as a very dark and erotic character who instead of pulling the wool over people's eyes, eats  it right off their bodies. Moth's victims might include Nicole Kidman, Halle Berry, Ziyi Zhang, Portman and Dunst once again, even Sharon Stone if her collegen holds up.

[can-do-man]

if you do have the nerve to where that white sun cap. A little advice, take it off before you go into the bank.

[dyce]

Way to go lat, you 1 shot away, I'm glad for ya and now I'm hopin you have a good winter down there, it's spring time here. I'll have to watch the sun but I'm used to no shirt, shorts , doin yard work and gettin a tan.

Svr is next in order for you, Dyce

[lat36]

Cheers Dyce - next week couldn't be over soon enough for me, I reckon the riba is worse than the peg, it's really run me down now. Another rainy winter would be too exhausting... will let you know how my EOT tests work out, hope your battle continues to go well.

[jmjm530]

As you suggest interferon thearpy may trigger a lupus-like reaction in some people. Googling "lupus interferon" brings many hits including: http://www.scienceblog.com/community/older/2001/E/200115671.html

[DoubleDose]

Here is another article.  

http://www.lupusresearch.org/lru_dec_03.html

Maybe we are demonstrating a sort of therapy induced 'lupus' caused by after-effects of interferon.  Maybe, as one Johns Hopkins doctor told me, the effects of interferon therapy go on for many, many generations of cells, long after the therapy has ended.  In other words, maybe we are still producing lots of interferon!!!!  Maybe, that is why so many have 'lupus-like' syndromes after tx.  The articles all seem to blame lupus on some sort of abnormal interferon production within the body.  Well maybe that is what we have become:  abnormal interferon producers...and thus have created in ourselves, a state of ongoing autoimmunity.

ALSO,......Maybe.....this is why the virus does not come back!
Maybe we really are holding a 'latent virus' in eternal remission, by maintaining our very own 'interferon producing system'!

Just a thought!

(Now you just knew I had to have some sort of 'darker' meaning attached to this whole syndrome!!)  Maybe we now produce our own  drugs!  We don't need Schering Plough ever again....just turn on the interferon pumps!!!! like an oil well!

It is a funny thought.  Comes from being up too late at tax time.

DoubleDose

[FlGuy]

From closed thread.  It would have been interesting to graph riba intake changes vs. hgb level and procrit intake. Ever do such a thing? I would think that for each person, less the Thal folks, there would be a formula for riba dose changes.  But, by the time you get it regulated with accuracy hopefully tx would be over.

[jmjm530]

DD said: ALSO,......Maybe.....this is why the virus does not come back!
Maybe we really are holding a 'latent virus' in eternal remission, by maintaining our very own 'interferon producing system'!
---------------
I asked my doc about this very issue but not in terms of Lupus. My question was whether it was up to the immune system is boosted/trained by the peg to keep us SVR -- or, is the virus simply gone, therefore the strength of the immune system being irrelevant. My doc said it's the latter. When you're SVR, the all replicating virus is gone. Killed.  Therefore it can't come back.
Who knows, but I'm hoping my doc is right.

FL,

As mentioned earlier, I did graph Procrit dose against hgb levels and came up with some useful data to help determine my individual delay curve.

Regarding adding riba dose to the equation, it could be interesting depending on your intent. But personally, while I believe in selectively off-label increasing riba dose, I don't believe in decreasing riba unless hgb cannot be controlled with Procrit which is the scenario it might be helpful.

Increasing riba dose is another animal, and in lieu of special blood test (not avail in USA)your hgb level could be used as a crude barometer to increase riba, of course under doctor's supervision. But then again, how you tolerate a particular hgb load becomes equally important -- because the idea here is to keep increasing riba to reasonable tolerance -- so that adds another plot to the graph :) And, of course, hgb tolerance changes over time -- another plot :) -- So, yes, by the time you finish treating you should have some very useful data for future treatments if necessary. LOL. But seriously, all of the above could be useful, and if I had to do it all over again, I would minimially have kept a more detailed treatment diary with sfx, dates, meds, blood levels, etc.

[timlotus]

Hi Jim

I don't know if you remember me -  i used to post a bit when I was on treatment last year. I just saw this thread and can tell you that this problem is improving for me 7 months post Tx.

When I came off Tx I got relief from the tiredness and mood problems quite quickly, but I then got joint pains which I didn't have on Tx, first in my knees then my wrists and fingers. This is a lot better now but lasted several months. My face remains dry and a bit flaky but again is beginning to improve. I have reddish patches on my face, not very unsightly and not in the typical lupus T-shape but more under my cheekbones and in the creases eithe side of my nose.

Anyway I was very sun sensitive on treatment, and today I went for a walk over the hills in sunny weather. I definitely caught it, and was a bit pink afterwards but 3 hours later my skin looks and feels fine. It doesn't even look dried out. I am going to take it very easy with the sun this year, but I feel optimistic.

BTW I just got my 6mo post TX PCR. Still clear thank goodness!! Good luck to you and everybody on this board.

[jmjm530]

Very happy things are working out for you and a big congratulations on that big 6-month PCR! I can be patient with the skin thing as long as I know it'll get better down the road. Your story is encouraging as symtons sound somewhat similar to mine. Did you ever find any sunblocks that worked better than others. The little research I did, says sunblocks (titanium oxide? and zinc oxide, etc) work better than sunscreens as they actually block the light as opposed to sunscreensthat use chemicals to screen certain rays. Some formulations use both. I believe the Ironman products have both in them and are waterproof to boot although not sure how kind they would be to my skin. Thanks for checking in.

-- Jim

[timlotus]

The titanium dioxide sunblock idea makes sense, though I can't say I tried it. I did find the lotions and creams with ordinary sunscreens tended to be irritating. I went on vacation to France in the summer last year while on treatment and found a broad-brimmed canvas hat, lightweight long-sleeved shirt and lightweight long pants to be the best protection.

If you can find a preparation consisting of titanium dioxide in the simplest carrier possible such as the Peter Thomas Roth one, or one by California North, this should be very kind to the skin. It does look a bit odd though as TiO2 is a very opaque white pigment, so you might end up looking like a mime artiste
;-)

Tim

[timlotus]

Hmm a bit of research tells me that the Titanium Dioxide in these preparations is 'micronized' so it doesn't look like a white paste on the skin. It does sit on top of the skin unlike chemical sunscreens which get absorbed. Titanium dioxiide is completely non-irritant and hypoallergenic, as is Zinc Oxide and the latter is slightly anti-microbial as well. This osunds promising

Tim

[jmjm530]

Here are my hits from earlier today. I believe some are the same (like Ironman and radyx? with different names.) Hopefully the micronized titanium doesn't go on like white kabuki paint but apparently some of these brands have a matt finish which you could apply makeup or bronzer over and some even have a tint to match skin tone. I haven't ordered any yet but will soon. Let me know if you try one and what you think.

-- Jim

http://www.prolithic.com/hpages/bodycare/ironsun.html
http://www.coolibar.com/05146.html
http://tinyurl.com/he3mk
http://tinyurl.com/f9tov
http://www.skinrxclinic.com/sun_block.htm

[jmjm530]

The following for example, appear to be the same product with different names/packaging: Block and Tackle,Slopes,Pro Golf,Rubber, Ducky,Ironman,RadX. All are all-day waterproof and I know many athletes use the Ironman. Not sure about their formulations, however, as I did not see either Zinc or Titanium in the ingredients as in some of the other sites.

Q&A here at distributors' site:
http://www.mysunscreen.com/faq.php

SkinRx had some interesting looking products including tinted sunblocks as well as other skin care products that might help lupus like rashes. http://www.skinrxclinic.com/sun_block.htm

Blue Lizard is another block with titanium here:
http://www.coolibar.com/05146.html
Also some good sun block clothes/hats on coolibar's site.

I guess a little experimentation is in order this summer.