Three Questions.

[matildamillicent]

I've got a couple of questions, I hope someone can help me with. My rheumatologist is thinking SLE and/or Sjogren's.

I'm having my lip biopsy next week. I'm hoping to be able to go to my cousin's school play that night. My lip biopsy is booked in for 9.30am and the show is at 7pm. I've read some horror stories, does anyone think I'll not be able to go to the show that night?

I have ulcers in my nose. I know this is a Lupus symptom, but is it a Sjogren's symptom too?

And is sun sensitivity a symptom of Sjogren's? I am on Plaquenil (which I know causes problems with the sun), but the other day I got a raised, red, welt zebra-like rash on my legs and feet. My GP said she thought it was solar urticaria. The other day I got a bruised looking rash on my legs from the sun. Today I was sitting outside, it was overcast and then I got a huge migraine, nausea and like I was going to vomit and really dizzy. My GP was going to ring my rheumatologist to discuss these symptoms, but I haven't heard back. Does this sound like a medication reaction? Or something else?

Thank you.

[anita]

There really is no way to determine if your lip biopsy will keep you from attending the play.  I had some discomfort, but would have been able to do something like that...maybe with some tylenol on board.  Others here would have stayed home.  You might have a high tolerance for discomfort and it might not effect you at all.  You'll just have to wait & see.

Someone with lupus should answer about the ulcers.  But logically speaking, SjS causes dryness...even in the sinuses, so I wouldn't think ulcers can occur even in SjS.

It is always best to look at any new meds when a new symptoms shows up.  I don't think it's common for rashes like that to occur with Plaquenil, but you also didn't say if you were on other meds or how long you've been on the Plaquenil.

The rashes could be from something completely different.  See what you rheumy has to say when they reach him/her.

[gold55]

Matilda and Anita,
I have been told that I will experience more symptoms in the sun because I produce the SSA antibodies which react to sun.  People with Lupus evidently have the SSA Ro antibodies although I have not been diagnosed with Lupus.  My blood markers are positive for SJS but only the SSA's.  I experienced more swelling this past summer and joint and muscle pain.  As soon as we drop into the 70's and 80's out here my joints seem to feel better and swelling goes down however, the dryness really sets in out here in AZ which causes my sinus' and eyes to be miserable.  So, with that said there really is no time of year that is great out here!  I believe people sensitive to sun can still enjoy summer as long as we lather down with high SPF's.  Not sure though....I've got to discuss summer weather with my doctor.   

[Sooki]

I was on plaquenil for 6 months of winter.  When the sun came out in the spring, I got a big sun-exposure rash.  I went to a dermatologist (I thought it was poison oak) who did a biopsy and found it was lupus.  Then I went to my rheumy (duh) who confirmed the lupus.  He implied that he could probably have told from looking at the rash what it was.  He said that sun reaction from plaquenil looked quite different from what I had (raised, red, itchy).  And in fact, plaquenil often helps the kind I had (although it didn't).  I added cellcept to the mix and the rash went away and improved a lot of other symptoms that had been getting worse.

Sunscreens didn't help my sun sensitivity. My skin felt prickly the second the sun hit it.  The only thing that helped was clothing.  But I figured out how to be outside in lightweight clothing, gloves, hats.  And I could enjoy the shade wearing less.  And inside with the doors and windows open.  (I love summer).

In terms of distinguishing which symptoms are from lupus and which are from sjs:  there is a huge overlap.  There's like a huge pool of autoimmune symptoms.  I think sjs is diagnosed from specific dryness issues.  Lupus is diagnosed from a few other symptoms including skin rash.  But the majority of symptoms could be either or both.  I don't think nose ulcers are diagnostic for one or the other.

I would probably plan to go to the show after the lip biopsy (you could drop out at the last minute if you had to).  Just plan to have soft foods to eat during the day (yoghurt, custard, pudding, pureed soups, pumpkin pie filling).  You can eat; it's just dangerous to chew anything because of the numbness. Lie down during the afternoon. You'll probably have ibuprofen or something to take the first day or two, so don't plan on driving yourself that night.

For me, the lip biopsy was the only positive test I had for sjs.  I appreciated having the results from it.  I hope you have an easy time of it.

[Scottietottie]

 Hi matildamillicent 

I had a lip biopsy and had very little trouble after it. I would definitely have been able to attend a play - had there been one to go to.

SjS can definitely cause sun exposure problems - as can lupus - and Plaquenil.  I used to get a wonderful tan and now I just burn up and can burn through glass. When I go out I cover up, use sun block and waer a hat.

Take cafe - Scottie 

[matildamillicent]

Thanks so much everyone, I really appreciate the support here. I know that everyone's experience of the lip biopsy is very different. I hope mine isn't too bad or she refuses to do it! If I do get it done, I'm hoping it shows something!

As for the nose ulcers, my rheumatologist has referred me to ENT, but I've been told it could be months before I see someone. That's ok though, they don't hurt. I just thought they might be a defining symptom.

I'm not positive anti-ro, which I know increases the sun sensitivity. Maybe it's partly the medication (Plaquenil, Meloxicam, Doxycycline and Prednisone). But it definitely seems the sun flares up what ever is going on.

Thanks.

[valene2009]

i cannot be in the sun at all. If it is over 70 out I get really super dizzy and dehydrated no matter how much water i take.  In the summer when its extreme i have to totally stay inside-last summer i ended up in the ER due to severe dehydration.sux.. and that was before i got on plaquenil.  I havent noticed sun sensitivity worse on plaquenil but i believe it is one of the side effects. i believe sjogrens in general makes you sun and heat sensitive. ((