I'm grasping at straws, but if anyone has any insights, its gonna be you all. I went to the eye dr for my annual testing since I take Plaquenil. I told him about episodes of such intense burning in my eyes (as if I'd gotten sunblock or something in my eyes). The burning causes my eye to water a lot, and I can't open my eye til the burning subsides. Also told him about times when it feels like I have a hair in my eye, but when I look, there's nothing there. Told him about episodes of when it looks like I have pink eye (red and puffy) but no discharge and it goes away on its own in a day. My eye dr said all this sounds very much like symptoms of dry eye. He gave me some OTC artificial tears. He looked with his "magic scope" into my eyes and said he saw decreased tear production. (although its still within normal range)
Next, my mouth. My tongue feels like its burning most of the time. Sometimes my tongue and roof of my mouth feels like they've been scraped raw! Seriously thirsty all the time too. Yesterday, I noticed yet another mouth sore on my gums. They're very small, but I can sure feel it when I brush.
I have no idea if these are connected but: I have this tiny cut on the tip of my nose (you know those hurt!) that heals, then comes back time and time again. Finally, I find my skin is itching a lot more too. I know its getting colder, but I live in SC. It's not that cold :)
I'm going to my routine 3 month checkup at the rheumy's beginning of Dec. What are your thoughts?
I am always leary about answering definitely but those are symptoms that I experience with the Sjorgrens. My tongue sometimes looks like it is thrush but it isn't but I treat it with thrush medicine which helps a lot. It is a prescription. I drink a lot of water and use a lot of eye drops. Sometimes they feel like they have sand in them? Yep, dry eye or sjorgrens. There was a discussion yesterday about products to use for the dry skin. I use Aveeno everything when showering. It has helped me a lot. What about a cream for the cut on your nose and lips? Vaseline? I use Bag Balm a lot and that works best for me.
Definitely ask your rheumy about all this. There is a test for Sjrogrens but for me it is showing normal right now but at one time it was 599 which normal is 1.something. Why normal? no one can answer that but everyone says I still have it. Good luck, Rosie!
Thanks. I understand feeling leary about answering the "could it be..." question. I guess I really wanted the reassurance that it would be smart to talk to the rheumy about this.
reet said:
I am always leary about answering definitely but those are symptoms that I experience with the Sjorgrens. My tongue sometimes looks like it is thrush but it isn't but I treat it with thrush medicine which helps a lot. It is a prescription. I drink a lot of water and use a lot of eye drops. Sometimes they feel like they have sand in them? Yep, dry eye or sjorgrens. There was a discussion yesterday about products to use for the dry skin. I use Aveeno everything when showering. It has helped me a lot. What about a cream for the cut on your nose and lips? Vaseline? I use Bag Balm a lot and that works best for me.
Definitely ask your rheumy about all this. There is a test for Sjrogrens but for me it is showing normal right now but at one time it was 599 which normal is 1.something. Why normal? no one can answer that but everyone says I still have it. Good luck, Rosie!
I have dry eye as well. I didn't know I had it because I'm asymptomatic. I had lasik surgery and that is when I found out I have dry eye. I use drops every hour and an allergy drop every morning and then again at night. There is an over the counter eye gel (sustan is the name of it) that you put a drop in before going to bed. It's thick and feels weird but it helps a lot. My Rhuemy always ask about mouth sores and dry eyes he says that is sjorgens disease and is very common with Lupus. I do have an occasional sores in my mouth but now as bad as your. I would ask your Rhuemy about it! My other idea is did this all start when you started Plaquenil? It could be side effects from that as well. Hope you figure out what it all is and can get some relief!! I'll be praying for you.
Definately worth bringing up with your rheumy since they sound like sjogrens symptoms. regardless it can cause your complications down the road such as eye ulcers, infections and terrible dental problems. There are many aids for then symptoms. Script and OTC. I keep suglarless gum and seltzer water with me at all times. Healing hugs and wishing your a comfortable weekend .~ Maré
Sounds like it could be Sjogren’s, I’ve had it since I was 7 so am fairly knowledgable about it by now. I find tea tree oil to be very helpful with the mouth sores and thrush. I put a drop on the end of my toothbrush, put the toothpaste on, then scrub away, making sure to scrub my tongue too. Just don’t swallow it! There is a blood test for it as well as a biopsy that can be done. Both were positive for me. The lip biopsy is fairly quick, just numbing shot, quick small slice in the lower lip, gather some tissue, get sewn back up and off you go. It’s sore for a day or so. I would definitely mention it to my rheumy. Oh, Sjogren’s dries up all the mucous membranes so if sex is uncomfortable, that can be part of it. Hope you get an answer soon. Hugs, Annemarie
I agree with the others. I was diagnosed a month ago with it. My eye doctor first told last spring that I have severe dry eye and put m e on OTC eye drops. I also have dry mouth. It gets very raw feeling at times with the back side of lips like they are burned. I also have saliva gland pain and they feel like a toothpick is stuck in it. I have very dry sore skin on my arms especially since they get the most sun. I go through lots of lotion.
I pray you get some definite answers soon
Hugs
Karen
My eye doc said: All people with Sjogren's/SICCA have dry eyes. But all people with dry eyes don't have Sjogren's.
I'm with the symptoms, but sounds like some lupus and some Sjogren's symptoms. My rheumy diagnosed SICCA before I even knew I had it--just by my complaints. My mouth sores and burning are always due to yeast/thrush. When it gets sores I take oral meds to combat it and if the doesn't work I take fluconazole. This med is very expensive, kills the yeast in 24 hours and the docs hold back on prescribing it which really irks me 'cause I've suffered from some massive yeast infections (from top to bottom literally, including my lungs).
Don't forget the Pilocarpine for the saliva--helps stimulate it. Saliva helps relieve mouth soreness.
I know how you feel about your eyes , I have moments like this!! But when I went to the doctor she Always tell me that everything is okay and my vision is fine . But to keep explaining drives me crazy! But she do tell me to get the eye drops that help to keep the eyes from drying so much, and will help to make them stay moist. Oh ! The mouth , boy mine also do this,but of course when I go to the doctor this is not going on and he look at me like what are you saying? So lately I just been rising with peroxide or brushing my teeth with it every 2-3days. So far it is working, but am not going to use it every week! Hope that you get some help with this soon , sometimes I think we know more about this than the doctors do!!..LOL…Beverly L.
I, too, like reet experience those. Also, I would speak with your Rheumy. I love the Biotene products for the mouth issues, which although the sores may be small are SO painful. Many people use the OTC eye drops and I really hope they help...my eye doc appt. is tomorrow. One thing I didn't know, but realize now is just how much my nose runs even without a cold or flu.
