Sun flare up?

I am undiagnosed but Lupus is on my top of suspects. I am curious as to the extent of these sun reactions. In the past I have gotten rashes from heat and sunlight, but that was very rare. Today, I was active in the sun for a few hours, and I completely crashed. I got really super painful, mainly muscle and bone pain, way worse then it's been in a very long time. I had to lay down and sleep, but I hurt soo bad! My femers feel cracked and the muscles just ache like there is no tomorrow. I cant think straight and the amount of fatigue is unbareable. Is this a lupus sun flare? Or not?
I have been off Plaquenil for  3 months and I didn't notice there was a difference until a week and a half ago and it was definately helping! I have been in so much pain! It helped my emotional/neurological symptoms also, I feel completely helpless and a wreck off of it.
I have yet to have  a positive ANA but I have been on the Plaquenil since the very begining of my illness over a year ago.
Thank you

[karajo]

Wow!  You described exactly what happened to me the first time I realized something was wrong.  Although you could add nausea and vertigo (through the roof vertigo).  

Are you having joint pain?  I would encourage you to spend time in the sun prior to another ANA test.  I've heard that plaquinel can cause your ANA level to be low or negative.

[fordwoman88]

I didn't have nausea per say, my head and brain felt disattached and everything felt a bit dizzy and misoriented.  A bit woosie.
I have tons of joint pain. It is one of my cheif complaints. Mainly in my elbows, knees, hips and hands.
I have an appointment on Monday with my rhuemy for another ANA test. Maybe now that I know the Plaquenil worked, I have at least 4 of the 11 required symptoms, and if my ANA is positive, I will be able to get a diagnosis. Can you think of any other questions or tests I should ask my doc about??

[Sherri90049]

Sounds alot like it to me. You should be careful with the sun. You know the drill: shade, hat, sunscreen, etc. I got alot of relief from Plaquenil, too. You might want to consider going back on it. The other thing that helped me was changing my diet. (got rid of gluten and refined sugar and I also drink a ton of water!) I'm glad they treated you even though you didn't get the + ANA yet. Hope you feel better soon!

[karajo]

Let us know how you visit went.

[fordwoman88]

Sherri90049: The doctor put me back on Plaquenil so I can feel better, 200 mg. He also did another ANA, AntiDS DNA, ENA, CBC, SED Rate, CRP, Tissue Transglutaminase IGA, Vit D, CK plasma and a metabolic set. So I will see the results in a few days.

Karajo: It was interesting, bc in the mist of him asking if I had a rash along with my sun sensitivity this weekend, I said no. He then asked if I had been getting rashes, and I told him not very often but sometimes. And he noticed a bit of a rash on my neck, we pulled down my neck hole and my entire chest was engulfed in a rash. With the new knowledge of the Plaquenil working and the rashes along with sun sensitivity, he got really excited that we were close to a diagnosis. He is thinking Lupus or Connective Tissue Disease.. ?

So I think for the most part it went really well. We will see how my results came out.

[karajo]

Are you taking 200mg of plaquinel once daily or 200mg twice/day?

The most common dosage is twice daily.

I know no one wants to be told they have lupus, but I know after I had been near death several times in the year and a half of being very sick, I was so READY  for a dx.
Praying for ya kid.

[fordwoman88]

I'm on 200mg 2x daily.
I did get my results back, everything was normal! No ANA, no inflammation nothing!!
I'm getting so tired of being sick and nothing to show for it.
Have you ever had this problem?

[mommies4]

you just described how I live,Hi  fordwoman88
              i've been in cronic (chronic) pain for 11 mths. now with no answers,and lots of Drs. later I feel like I can't get a break ! All my ANA and Blood always come back normal.  : ( ,    
the only blood that comes back alittle high and 9 out of 10 times always is WBC alittle elevated for 9 yrs. now  when sx started gradually.? and yours ? I get like this prickly redish bumps all on my neck line on my back,more like the top half of my back.

Ialso have what I call the scratch fit . My whole body just starts itching all over for hours .Then it just stops.               I'll try and follow you more       mommies4

[fordwoman88]

My WBC was WAY high for about 5 months, now its back to normal. But that is very strange that your WBC is high too! They thought I had a autoimmune infection in a biofilm...OHSU docs think that doctor was a crack. Have you looked into Lyme disease?

[gorillagirl59]

I just had another lot of blood taken for ANA, wish I knew to get some sun, my previous test had a negative ANA, but I'd been spending a lot of time housebound at the time! How long do you need to spend in the sun to get the ANA to show up if present? I get the rash on my face and waiting to see a rheumatologist as I am sure I have lupus.

[karajo]

I just spent about 10-15 min in the sun prior to going inside the doc office.  The lab was probably drawn about an hour later.  It made my ANA go from neg to 1:2,560.  

They don't dx lupus by an elevated ANA alone though.  They also look at symptoms too.  You have to have at least 4 of the 11 criteria for lupus.

[karajo]

Haven't been on the lupus forum for several days now.  Sorry for the delay.  

If the plaquinel is helping you and your dr. agrees to continue, I would just be happy w/ the improvement.  Trust me, after a dx they really don't have anymore tricks up their sleeve (that I know of).  

[gorillagirl59]

Thanks, I had more than 4 of the 11 criteria but the neg ANA meant they ruled it out. I have been on that familiar medical roller coaster where you have to get lucky and find a doctor that wants to help. Finally convinced one to give me the referral to a rheumie.

[karajo]

Praying for you.  So sorry you are going through the frustration of it all.

[NikoK]

Wow- I'm not crazy!
I've never been a sun-worshipper- as a kid we played all day outside, but as of about 14, I was into a different life- as we all were at that age, I think.  Since then ( work, university, grad school, work, work, work, lol) I haven't had much summer sun at all-
Two years ago I started getting sick in the sun- and in the past 10 months or so I've gone out (live in Chicago) for 20 minutes or so- sunscreen, hat, etc., and came in with elevated heart rate, nausea, loose bowels, confusion, "brain fog", and large, red blotches all over my neck, sternum/collarbone/etc.,  (and a red face but no DISTINCT rash shape- just red and puffy).  Last week after 15 minutes or so taking pics of storm clouds from our garden, I came in and got sick right away- barely made it to the commode-and had to take 1.5mg of Xanax to calm my heart.
Have an RA diagnosis and waiting for Lupus results.
As well- get hot and cold all day, every day-sweating, them chills- and even when I had BAD bronchitis in the Spring, (as did my husband, who had a 103 degree fever), I had no fever, but frozen hands and a head and face so hot, I warmed my hands on my face.....then went to the ER.  2 courses or Zithromycin and a course of Ceftim later, I've almost kicked a 3-month bout.  Never had asthma- now have an albuterol inhaler.  TOTAL life change in under 2 years- all following a second spinal injury, which culminated in anterior cervical fusion at C6/7. RSD/CRPS, 2 stellate ganglion injections (sounds like I'm reacting to something!!!!) came along- then RA, and now, possibly Lupus (and I fit many of the criteria, alas- whether I end up being ser-positive or-negative....).  Here's hoping for the best!
But good LORD- I never thought the sun would destroy me like this- I'm fatigued enough- now a few minutes outdoors and I'm in bed, under a fan and a blanket !?!?!?!?!

[karajo]

Hi and welcome to MedHelp Lupus forum.

I know there is also something where people get sick from being in the sun. I'm not familar w/ that.  I noticed that you did not mention joint pain.  That is one of the most common symptoms of lupus.  LBe sure and let us know what you find out.  Be sure and get a copy of your lab results too.