[photosensitive]

Hi everyone,

Thanks for being here I've a weird photosensivity problem or two, I'm not sure if I belong here, but I really appreciate you letting me be here at least until I find out if I do

For the sake of statistics:lol: I'm a 36 yo female. The autoimmune diseases began to become severe at age 19, with a big surge in activity over the last 10 or 11 years.

I have multiple autoimmune diseases (close to 10, comorbid--moderate to severe RA, Cricoartynoid RA and Fibro, severe Iron-deficient and hemoglobin-deficient Anemia (have been treating with I.V. iron,) moderate-severe Degenerative disc disease, (some sort of moderate-severe inflamatory nerve disorder, waiting to see a neurologist soon,) Paradoxical vocal cord dysfunction with Multiple chemical sensitivity syndrome, severe erosive Lichen planus, Seborratic eczema, severe Sjorgren's w/ damage to my eyes, incl. a lens and retina...complete hysterectomy at 22 due to Endometriosis, bad allergies (many severe food allergies,) asthma...those sorts of things...) and my rheumatologist keeps saying that he doesn't want to rule out Lupus (so of course I wonder what he's seeing but not saying, but there are a few symptoms that don't seem to fall in with any of the other conditions, maybe it's those he sees.)

The one I'm most curious to place is severe, reliable photosensitivity. My neck and chest have *always* gone bright, scarlet red in the sun (even when I was living in Michigan,) but here in Arizona it's more intense and includes the face (I also "flush," belly button to the top of my head, I don't really notice it, but other people point and ask me what's wrong, lol. No one's ever explained that one.) More curious (and painful) are the eye and hand reactions. Eye-wise, I've been diagnosed "Photophobic," likely due to the severe Sjorgren's and while waiting for over-prescription dark sunglasses to come in the mail, I never leave the house or a building without those roll-up sunglasses you get when your eyes are dialated (the cornea specialist says I can't get a new eye Rx for at least 3 months--giving the Restasis a try and he'd like me to have both upper and lower punctal plugs.) Hand-wise...I'm used to having red, painful joints, but stepping just from the house to the car or the car to a building causes an instant "flare," radiating, it seems from the joints but covering both hands entirely. (I've been able to rule-out medication-related sun-sensitivity, and these aren't sunburns as they go away rapidly, within an hour or so, and I'd *really* love to be able to control this or, are I dream--lol, make it go away.)

The rheumatologist wants to start me on Enbrel (likely when he comes back from vacation toward the end of November,) so I'll be buing sun-protective clothing from Solumbra this month (likely this week.) A light jacket, a 6" brimmed soft fabric hat...and I've been considering gloves, worn a little loose. The rheumatologist in concerned gloves could cause swelling and make the RA worse, but I have to wonder...when I cover up my neck and chest they don't go scarlet in the sun (even when it's 120 deg. F, covering up tends to protect me.) If I did the same with gloves, could it work for my hands, too?

So, I'm just saying "Hi," looking forward to "meeting" everyone and wondering what you think (since I don't know what to think anymore I've been fully permanantly disabled/unable to work for the last 7 years, but as often as I'm to specialists' offices it *feels* like I'm still working, LOL.)

I really do appreciate you all being here (although for everyone's sake, I wish this site didn't have to exist for so many--here's to a cure! For all autoimmune diseases, for all us.)

Thank you,
photosensitive

p.s. Anything I can do I do at night to avoid the sun (night's about the only time to avoid the sun here in Arizona...it's a little like living with the heat of the equator but the constant sun of the Arctic circle, lol )

 

[Lily]

Hi there and :welcome:

The site is a great source of information and support, hope you feel at home here

It would be difficult to comment on your situation without knowing what tests they have run on you and what the results have been.

One thing I did want to mention though is the fact that Enbrel can in some people cause a drug induced lupus...........not something you would want. It does go away once the medication is stopped. Has your Rheumy tried you on any other meds............or are you taking anything currently?

love
Lily

 

[debatat]

Hi and welcome to the site. It is a great place to find info and support. You have had a lot ot deal with. I assume you use high factor suncream to protect your skin? If not, something to think about.

Maybe you could join us in chat sometime!

Deb

 

[countrylass]

Hi there
u are most welcome

im 38 also had problems since 17 and being tested for lupus im on methotrexate for rheumatoid.
same issue with my face and neck,scalp and people do say things not nice is it.
u take good care try join in chat room its great fun,lots upport on here and such helpful info made huge difference to me.
and many others.
i have to say i have tried sun block and made difference to my face.
sorry to hear how ill u ben,how u suffering hope your rheumy doesnt put u anything that may agrevate lupus until hes sure u do or dont have it.

lv and gentle hug.
countrylass

 

[photosensitive]

Hi there Lily, debatat and countrylass! Thanks so much for writing--((I feel welcomed)) :thumbs:

I'm with you Lily, as soon as the rheumy comes back (I'll see him Nov. 23rd) I'll say yes to Enbrel, *but only once we get results back--hopefully a negative for the lupus marker.* It's some comfort, though, to know that the symptoms would likely go away after ceasing the Enbrel (the idea of taking on more symptoms during the trial period...ohhh...yes, you're so right, it's best to head things off before they happen (if they haven't already.) Thank you for caring and giving me the "heads-up", for now and ahead of time. :yes:

Hi Debatat I'm guilty of not wearing sunscreen when I'm just running out from the house to the car (about 12 feet,) then from the car to a building (I park as close as possible due to the Ra,) but, yeah, I absolutely have to change my ways. I look a lot like this: :blink: when I'm outside--esp. until I put the goofy little sunglasses under my glasses, lol. It's weird, I've heard (and processed) for the latst 14 years that Arizona's second only to Australia for incidences of cancer (as well as deadly spiders, ironically,) but it's just been this year that I've noticed that the side of my face nearest the window when I drive has two or three freckles--the sun's being magnified by the glass, apparently. So, yeah, I *absolutely* have to develop that habit--I have some Neutrogena Helioplex 100 proof sunscreen--I'm going to put it by the front door so I'm reminded whenever I go out (as well as making up a magnet that says "Sunscreen!" to stick on the door--eye level--should I forget about the bottle.) The upside, I guess, to being unable to work is at least I don't have to go out often, not daily, at least, and even then I try only to go out after sunset (right now that's about 6:15pm.) Mainly it's drs. appts. I have to go out for during the daytime and usually there's maybe only 2-3 of those/month. But you're absolutely right, there's no reason for me not to act responsibly around the sun. Usually I've worn sunscreen if I'm going to be out for the day (even if it's cloudy,) it's just time to condition myself that 100 brief exposures add up just as quickly as one bad sunburn. I need to stop acting ignorantly--5-7 minutes in the sun during the summer burns the tops of feet and breasts so easily. It's so easy to forget the damage the sun can do when I'm not hurting from it, I guess.

Ordering from Solumbra should help a bit, too (small delay, ordering tomorrow morning.) It looks like it'll be a nice, big hat, a zippered jacket and gloves (I'm trying to figure out whether I could wear one of their thin skirts under my dresses as a sunscreen "slip" of sorts (I have to wear dresses due to the lichen.) My dad has vitaligo, so he's been wearing Solumbra pretty faithfully for about the last 10 years or so--it works (without it he burns to a crisp quickly as he's loosing more pigmentation by the year. Solumbra says they're "30+ SPF with true UVA/UVB protection, blocking greater than 97% of UV rays," but from experience, it seems like it acts more like a 70+ sunscreen. So, a yea for that one! (A side note: I went out to see the over-the-Rx sunglass tint today: Cocoons--not dark enough and heavy, clumsy frames, so I'll keep looking8) I guess my new look will be "mysterious" behind dark glasses all the time, lol. Hey, I'm happy, if looking like a lady's version of Stu Sutcliff majorly reduces pain, that's an easy one:lol (p.s. My condolences to the Lupus community for loosing Lucy Vodden.)

And "Hello!" country lass, how are you?:thumbs: Would it be wrong of me to be happy to have found someone else with the same combo of Ra and the same types photosensitivity and the unique flushing pattern?:shrug: It feels a bit like finding a sister half-way around the world:lol: I'm definitely going to take up ardent sun protection from now on *and* get tested for the marker before starting Enbrel (there would've been a time once where I wouldn't have gone out of the house if I thought others might think I looked weird. Now I don't care:bigsmile:, so it should be easy, lol. Pain puts *everything* in perspective, doesn't it?) May I ask, do you find the sun sensitivity to have more to do with the Ra or the Lupus? That's part of the puzzle I'm trying to figure out.

When I first met my rheumy he wanted to put me on a DMARD right away, only I was *so* afraid of the idea of cancer, so we tried 3 courses of Plaquenil until I was unable to eat due to it and treated the pain and spasms palatively. (Speaking of spasms...Is anyone else experiencing these? For me they started small, a ticking finger, a jerking leg, getting worse over time. Now, without medicine, I spasm so bad all over that my core muscles spasm violently--I get so nauseated I can't eat or drink, so I have to take Compazine, and my GI track turns into Japan's bullet train. I haven't found a dr. who can place this weird symptom. The nerve pain peripherially, I think that may either be attributed to the degenerative disc disease or, I've read it may be possible with the Ra?...) Back to the rheumy...then, frustrated, we split for about a year--pure heck. Back again at every appointment he had this trying-to-figure-things-out look to his face and he'd order bloods for all sorts of things, like the anemia and Sjorgren's--he hit the mark every time. A few months ago, before starting treatment with the hemetologist, the rheumy wrote for me to begin Metho as soon as I was no longer anemic, but I think all the things that developed in the meanwhile (plus learning that the anemia would be chronic and severe, a combination of my body not producing enough hemoglobin, neither making well nor being able to obtain iron for the red blood cells, all combined with all the autoimmunes "chewing" up what little is made...the heme believes Metho or Enbrel or any other treatment will accelerate the anemia, too,) my rheumy looked deeply worried...or concerned? The speed with which things are progressing, plus the nerve thing and the extent of eye damage...I'm thinking he may be putting together a bigger picture than he's letting on about just yet. Someone once told me this dr. can see how things are progressing and treat the conditions in advance. Maybe he's doing that, I don't know. He's a bit flummoxed, too, that while I have swelling, I don't have water on the joints and while I've flares several times a day they're not constant yet the pain's unremitting without medicine...and all these things keep turning up, and not in the early stages either, like the damage to the eyes. So, the rheumy, the pcp, the hemetologist, the cornea specialist, every dr. has said,"Go get every immunization you can! Flu (done today,) Pneumonia (checking on tomorrow) ...H1N1...

Everyone here in the US is about as afraid of the immunization as we are of the virus as *no one's* giving any really believable info about either. We know people are dying from this thing (just this week a soldier who'd just passed his physically rigorous physical a week before died just 48 hrs after mentioning to his mom that he thought he might be getting sick. There's a city here near a military base called Huachuka (sp?)--less than two weeks ago the schools there closed after 36% of all students called in sick with H1N1 (the city's quite close to the Mexican border.) And we know that just after the first case of H1N1 emerged from Mexico and started coming home with kids on Spring Break that Cuba *completely* closed the entire country to *any* travel to or from Mexico. And anyone here who reads foreign papers, surfs the web, has family abroad or watches the Beeb:bigsmile: realizes there's a statistically significant, far greater number of people getting sick and dying from this thing around the world than are being spoken about here in the US...but everyone in government and people at the Centers for Disease Control are all very hush, basically telling people just to do as they're told and get the untested vaccine and disregard the huge number of deaths caused from an untested vaccine for H1N1 here back in 1976. And *no one* knows if more people here are dying from the flu itself or the vaccine against it. Yeah, no one's sure what to do, except I'm don't think I'll be able to start Enbrel or any other immune-impacting medicine until I do get the vaccine shot (the inhaled version is contraindicated for anyone with asthma or other lung conditions.) And I thought I just had to be brave against the possiblity of DMARDS and Biologics causing cancer...ironic, but scary, huh? Might anyone here know if there's anything to fear by taking the H1N1 vaccine? People in America are scared stiff. Typically angry talk show hosts are devoting 1-2 hour shows to the pros/cons of the vaccine, then trembling hard as they tell the camera's audience they're not sure what they'll do for their kids and their families. Medical employees are getting the first doses of the vaccine this week, then they're recommending it for kids, the chronically ill, the elderly or immunocompromised. Children (unless they're patients) are being banned from visiting hospitals this winter, it's been said. Does anyone know of any true success stories with this thing?

Sorry to talk for so long and wander so far:lol: You guys are a such a sweet, comfortable, and caring group! It *is* wonderful here...I can't wait to check out chat

I love this emoticon so much calm that I'll try keeping cool for now and hope your weeks ahead will all be "calm," too

*So* many hugs and love and pain-free days and moments wished for you all--for all your generosity, knowledge, inclusiveness and buoyant spirits!

With kindness and a very big heart toward you all!
photosensitive

 

[lin]

Hi just wanted to say :welcome:, and hope things go ok for oyu


im Lin nice to meet you xxxxxxxxxxxx

 

[countrylass]

Hi

well here goes

orignally diagnosed inflammatory arthritis but treated as ra,then remission thenre diagnsoed as sero negative ra.
that was feb 2008 onto methotrexate.face ahd red tiems wiht it voer eyars told hormones or tiredness.

then it got worse and worse and photo sensitive got worse when on mtx for soem time.

anyway now being tested for lupus classic butterfly rash im told along with clincially Rheumy admits may well made mistake and not be ra but just lupus.
so far feels more like both but what do i know lol

yes seems that way sisters ahh thats cute.
which 1 worse-id say ra.

go back november for results.


oh and that energy and fluorensect lightbulbs make face wosre.
my father andhis rgan ahve lupus along wiht rheumatoid and psrioriac arhtitis and ankloysing spondlytis in family clsoe family.

so rheumy wants get it right.says tis my age,sex and family history along wiht the rash and other bits that not showing as ra after treating me for 1 year.
and also checking me for erosive or non erosive arthritis whihc will be another clue to add to his diagnosis.

wish u well.
as can be.
and as for sun cream im same keep forgetting to do so.

 

[KarolH]

Just wanted to tell you welcome and wish you luck moving forward in your quest for good health.

Please do join us in chat sometime. I tend to really enjoy it in there. Hope to chat with YOU sometime.

 

[Shoesy1]

Hi,

I'm new here and just wanted to say hello! I'm sorry you are suffering too. I've only just been diagnosed and I've got so much to learn now - it's making my head whirl lol. I'm not even sure which lupus I've got, although I think its systemic lupus (if that's what you call it) as I'm having symptoms all over the place and not just on my face.

I too have a photosensitivity or sun rash - it comes up on my face. I have noticed though that I seem to have a bit of a butterfly rash too that's there all the time. I have started using high factor sunscreen - even on not sunny days and in cold england! haha. I don't know if it's helping yet as only been doing it for a few days and also it hasn't been sunny.

Anyway, I wish you well. Maybe we'll be able to chat sometime. I need to learn as much as I can from the other lovely peeps on here.

Take care hun, Ruth X