I'm confused about what a flare is. Does it mean increase in symptoms like joint and muscle pain, fatigue, etc. or does it also include increased dryness? My disease process is mostly centered in the dryness although I did/do have sore muscles and occasional joint pain. I also think I have neuro involvement like brain fog, depression, memory loss, etc.
But my main concern is the dryness.
Can dryness "flare" for weeks even months and then return to pre-flare state without an uptick in other musculoskeletal symptoms? I'm not noticing an increase in fatigue or pain but have noticed a 50% increase in dryness since mid April that will not let up and seems to be getting worse. I keep saying its an increase in plaquenil and spring allergens that are causing the increased dryness but I also suspect a flare. My gland are suddenly bothering me as well.
What can help this if it is a flare? I'm on 250 mg of plaquenil. Should I be on more? I hate the salagen but I've been taking it just to stave off any potential thickening of mucus in the glands or cavities. Is it safe to use salagen indefinitely? It affects my heartbeat. I'm on so many meds now it's scary. I used to never take any.
Any thiughts in flares and increased dryness and/or suggestions?
Quote from: sickmama on May 12, 2014, 06:17:21 PM
I'm not noticing an increase in fatigue or pain but have noticed a 50% increase in dryness since mid April that will not let up and seems to be getting worse. I keep saying its an increase in plaquenil and spring allergens that are causing the increased dryness but I also suspect a flare. My gland are suddenly bothering me as well.
What can help this if it is a flare? I'm on 250 mg of plaquenil. Should I be on more? I hate the salagen but I've been taking it just to stave off any potential thickening of mucus in the glands or cavities.
I can be corrected here, and anyone feel free to join in. I don't think you can "stave off" the thick mucous
nor the cavities caused by the arid oral cavity by decreasing your med. That is why you take the salagen. It creates a mucous for you. The disease itself has compromised your mucous/saliva. It attacks your eye and salivary glands..and replaces it with the sludge from the white cells eating those fluids. The mucous/saliva created via salagen (for you) is what coats your mouth and stops the bacteria growth in a dry mouth which affects your teeth. If you aren't taking your salagen as prescribed, you aren't making enough saliva to help you. To me that isn't a flare; that is not taking enough salagen. Again, I invite others to discuss what I believe I understand about the auto immune disease, SjS.
What I meant is that since this dryness "flare" began I now feel forced to take the salagen in an effort to avoid porential complications of excessive dry mouth, like cavities. My level of dryness before was more minimal and my dental exams have been normal. This new degree of dryness is certainly more severe and could potentially lead to more problems such as infected glands, swelling, etc. that's why I'm taking the salagen now but it gives me negative side effects.
My question is does dryness flare during a flare? Can a flare consist only of increased dryness and gland discomfort or does the definition of a flare require more systemic symptoms as well such as musculoskeletal pain? I really only have increased dryness, by about 50% from when the dryness set in in September 2013.
Sickmamma everyone's flares are different and the symptoms may vary based on disease progression.
You should express your concern to your md. As the saying goes when in doubt check it out. Perhaps your md can give you something to ease your symptoms.
Feel better soon.
My flares often include increased dryness, but like Cassi307 said, everyone's flares are different. You should definitely get in touch with your doctor. He or she can make temporary (or permanent) changes in your medicines to help speed up the end to the flare. You may also need a different medicine to treat your dryness. I, personally, got no relief from Salagen and had to switch to Evoxac, but only your doctor can make these decisions. I don't recommend taking higher doses of any prescribed medicine without direction from your doctor.
I hope you get some answers from your doctor and start to feel less dry,
Tracy