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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1740
   Posted 6/1/2009 7:19 AM (GMT -6)   
I'm sure this topic has come up time and time again, but I'm going to bring it up again anyway.  So far, I do NOT have lupus, but I do have confirmed seropositive RA.  The arthritis I have, however, is more related to lupus than RA, as it is nonerosive.  I've  always been a bit sensitive to the sun.  Never been much of one to lay around in it, although I never really avoided it either.  This year, however, I've noticed that any amount of sun exposure acts as a huge trigger to my arthritis sx.  I went on a family bike ride on Saturday for a couple of hours.  Within an hour or two after coming in, I was not only completely exhausted (keep in mind, this was a family bike ride with 6-year-old twins--we didn't go  far or fast so it was not a strenuous ride), my muscles were so sore, my arthritis was acting up big time, I had a horrible headache and was fairly nauseous.  The muscle weakness and joint stiffness lasted for the remainder of the day and evening.  I felt a bit better yesterday, stayed inside, and was fine.  This has happened before as well.  I do not get the lupus rash(es), but yet I know the sun has a tendency to make me sick.  Is this a sx of lupus?  Even without the photosensitive rashes?  I do plan on talking to my rheumy about it but I don't see him again until August.  In the meantime, I'm starting to dread summer vacation....
 
Thanks,
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/1/2009 9:35 AM (GMT -6)   
I hear you Elcamino. I'm not officially dx'd either but I am extremely sun sensitive. If I'm out in the sun for an hour, I am down for the rest of the day and sometimes into the next day. Feels very much like the flu. I'm irritable, sore, headache, nausea (sometimes vomiting as well), weak, and fever and my skin hurts. I do get the rashes but I have already been dx'd with lupus rashes anyway.  (adding: I do wear my sunblock)

I hate summer too and it feels like its going to be a hot one. I live in the South and its absolutely revolting the way the heat and sun is here. I stay in the A/C as much as possible.


Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009


coffeelover
Regular Member


Date Joined Feb 2006
Total Posts : 186
   Posted 6/1/2009 9:36 AM (GMT -6)   
Good morning....
 
Looking real quick at your signature....  I know that Plaquinil makes you super sun sensitive... I don't know about your other meds... 
 
You should always put on sun block (head to toe) before you get dressed.  Ears, hands, and feet are really sensitive, especially when out in the park (riding bikes). 
 
good luck
"There is a little naughty monkey in all of us!"
 
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
 
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement, Senna-Lax laxative daily.
 
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/1/2009 9:44 AM (GMT -6)   
Good reminder coffeelover about the ears, hands, and feet. These are the most common areas to be missed with sunscreen.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 660
   Posted 6/1/2009 5:08 PM (GMT -6)   

Don't know how long you've been on Plaquenil, but I did notice my sensitivity to sun increase by quite a bit after starting it.  And I also experience the nausea, weakness, fatigue, irritability, weakness etc. when I've had too much. 

Does everyone really apply sunscreen body wide even where covered by clothing? - like back and stomach, etc.?  I guess it makes sense if you know you're going to be out in the sun for an extended period of time....but as an everyday rule of thumb?

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/1/2009 7:45 PM (GMT -6)   
lucygd, The sun can penetrate your clothes but I don't put it all over my body if I'm not going "out" in the sun. I usually just put it on my exposed skin for everyday use. If I go out in the sun for prolonged times (which is very rare), I will put it all over especially on my upper body.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 660
   Posted 6/1/2009 8:28 PM (GMT -6)   
Thanks dbab.....I'm glad for that answer! - Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1740
   Posted 6/2/2009 6:37 AM (GMT -6)   
Thanks for the replies everyone.  I guess I will start wearing sunblock more routinely.  I should change my profile because I stopped taking plaquenil over a year ago.  So I know it's not plaquenil that's making me more sensitive to the sun. 

Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 6/2/2009 6:44 AM (GMT -6)   
Oh...I sure to feel your pain and sickness!!! sad I feel like i have the flu and i have to sleep. There is so much I avoid for fear of feeling that sick. I want to go back to Honduras on a mission trip, but I don't want to be the ball and chain dragged around. There is a guilt I carry when I get like this at work as well. Summers are long and hard for me, when everyone else is elated to have heat and sun. The heat seems to get to me as well. Blessings to you. Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5668
   Posted 6/2/2009 9:53 AM (GMT -6)   
Before you use a sunscreen over more of your body, make sure it is one you have used before without problems.

I once used sunscreen, bug spray, and drank artificially-sweetened lemonade all in one day - and got terribly ill (fever, hives, crazy itchy)...had to be airlifted from the island where I was doing turtle rescue work. (No allergic reactions ever before, either!) This was pre-lupus, but I consider it one of the factors that made my lupus active.

So be very careful and test products on smaller areas before you use them liberally, and try not to mix chemicals. Today I am very very picky about sun screen & bug repellent, and don't use artificial sweeteners ever.

Cheers,
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 660
   Posted 6/2/2009 12:42 PM (GMT -6)   

Great advice, Lynnwood - It's easy to forget about the accumulation of substances. I am another one who has had a bad reaction to artificial sweeteners and never ever use them and read labels to avoid them.  I also stay away from wine for the same reason (much sadder situation;-0)- I believe sulfite is  the problem there.  These responses also occurred pre rheumatology work-up, but I certainly had an uncomfortable few days following them. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/2/2009 2:11 PM (GMT -6)   
You are so right Lynnwood. I have become so sensitive to everything. I cannot tolerate much. I use unscented Dove, Amlactin lotion, and cannot wash my clothes in any detergent with scents or dyes. Never ever been like that before. Luckily the Neutrogena dry stuff (I forget the name) full spectrum sunblock doesn't give me any problems. It's always a gamble anytime I buy something new so I always get the smallest size first so I'm not throwing tons of money away.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 6/3/2009 2:45 AM (GMT -6)   
Unfortunately the methotrexate is well known to be photosensitising. In most cases it is agreed by all the top specialists Plaquenil generally slightly reduces sensitivity but that is just an additional help and doesn't mean less prudence. However in a few people, by a different and contradictory mechanism, photosensitivity does increase. ( Dr Wallace) Quinacrine might be a suitable alternative anti malarial for them.

At least by avoiding the worst of the sun we are less likely to get skin cancer and have younger looking skin. We need to take great care with our children too to avoid over exposure which is a potential basis for trouble later in life.

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