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I’ve heard others talk about “having a flare” when discussing their Sjs. What do they mean and how can I prevent one?


A flare up, often referred to as a “flare”, is a sudden, severe onset of symptoms. As example, you’ve been managing well, your symptoms have lessened and having momentarily forgotten the pain and dryness, you’ve been living ‘full out’ as you used to. And then, suddenly, those angry symptoms are back!
Several points are worth keeping in mind: First, the symptoms of flares are usually very similar to the symptoms you had when your disease began. If a headache signaled the beginning of your disorder before, the recurrence of a headache may indicate the beginning of a disease flare. If a vague feeling of having flu presaged your going to the Doctor when Sis was diagnosed, and this feeling returns, it is likely to be a flare. .
And it is for this reason that you must constantly check in and know your body and how it reacts. A certain way of avoiding flares is to write a diary of symptoms whenever you feel them. Link them to whatever might have triggered them. If, for example, you worked over-long hours, or had an argument with your son’s soccer coach, write it down. In the case of the workload it will be clear that you need to discuss with your employer your need to arrange your work hours to allow for a rest and in the case of that soccer blowout, it will be clear that such activities are bad for your health.
Also, this is the time to report to your Doctor and talk about new feelings or pains that are unusual. New symptoms may not only indicate a flare, they may also herald complications of treatment.
Treating a flare with attention and care will help you have fewer of them. Step back, take care of yourself, rest more often or make inroads to arranging your work day to allow such things, and you will go a long way towards having fewer occasions of “flare-ups”.

Printed from: http://www.sjogrensforum.com/ask-the-doctor/flares/ .
© Your Name Here 2017.


  • Jeana Norman says:

    Wow, I never forget that my mouth is dry or that I feel terrible and in pain. Whoever GETS to go into remission is lucky

  • Deborah Nugent says:

    Q: I have known I have SjS for about 4 yrs. now......I was never told that SjS can cause pain!! I know about the dry eyes and mouth, n other places, I know that the Disease can cause worse case scenerio the way the glands can clog up that it could cause Lymphoma.......also the med I take for it, a side effect could be also Leflonimide could cause Lymphoma!!! I really need more info if anyone has one... THANK YOU SO MUCH!!!

    A: Yes Sjs can be associated with pain, for example neuropathies, fibromyalgia, vulvodynia, interstitial cystitis ...to name a few.

    Good place to start for info is the National Sjogren's Foundation (www.sjogrens.org). Under the Book section is the recently updated Handbook, which is a comprehensive update on ALL that can occur with Sjs.

    dr c

  • Corinne says:

    Q: Hi I just found out that I have sjogrens I all so have lupus and the lymphoma cancer now this sjo what els am I going to get ? Thanks

    A: Maybe nothing more...maybe another autoimmune disorder. Once an autoimmune process starts (loss of tolerance to self)...it is more likely that others "may" develop.

    Follow the basics: Anti-inflammatory diet, exercise, stress management. Be vigilant and informed and check with your physician's if something new and different develops.

    dr c

  • Casey says:

    I have such bad burning in my gums, lips, and throat hitch shoots into my ears. Does anyone else have this with primary Sjogren's and will it go away or is this a neuropathy?? Thank you!!

  • Andrea says:

    I was diagnosed about 5 years ago with Sjs. I was on Plaquinil and Methotrexate for almost two years. I was tired all the time and fel really horrible. I quit taking my medicine and I feel pretty good! I have a lot of problems when the weather changes. I was diagnosed with arthritis in my hands, wrists, lower back and hips. Now I am getting to the point where the pain is almost too much. Is the medication worth feeling "drugged" all the time? I'm returning to work after 7 years, any advice?

  • shon says:

    I have burnning mouth syndrome, and that's a sign I am having a flare up. It took 5 years of feeling terrible, I was diagnose 2 years ago with primary sjs, and now fibromyalgia. Sometimes I feel like I like I am having a heart attack, the body aches and the fatigue and the numbness in face always causes stress. Now I am experimenting skin discoloration on my face more stress and depression. Has anyone else experience any of what I am going through?

  • Rosalie says:

    I was diagnosed with Sjogrens a while back. Flareups have increased with back and neck pain, brain fog, more tiredness, drier eyes, skin, and hair loss, dizziness, forgetfulness, naturopathy in feet, swelling of ankles, joints, and fingers. See chiropractor weekly for back and neck pain, rest more, still working full time, keep daily calendar up to date with dr appointments. Had several visits to hospital and urgent care due to flareups. This disease is not easy to live with but with God, not impossible to manage. I believe God will never give us more than we can handle. We are never alone. We are special to Him.. 🙂

  • Amy says:

    I am suspecting that I have Sjogrens and wanted to share how I have lessened flares. I have changed my diet and continue to monitor which foods may possibly be triggers. I believe that food can be medicine... I also believe our bodies are overly sensitive to some foods and that can manifest itself in many negative ways. First I avoided gluten for 2 weeks to see if I would feel differently and sure enough my inflammation and joint pain lessened dramatically! Since then I have had the ALCAT test performed and have eaten according to its recommendations and have found even more energy. I also avoid all processed sugars except for special occasions.

  • Judy says:

    I am having a terrible flare. Seems to always start like the flu with a very upset stomach. I called I sick this time. just sleep, drink lots, and hot pack my HUGE salivary glands. Don't know what else to do except ride it out.

  • Judy says:

    I am having a terrible flare. Seems to always start like the flu with a very upset stomach. I called I sick this time. just sleep, drink lots, and hot pack my HUGE salivary glands. Don't know what else to do except ride it out. What is an anti inflation diet??

  • drcarteron says:

    Will work on a post for Anti-inflammatory diet...but alot of info is available on line and there is a Tip Sheet available through SSF http://www.sjogrens.org
    dr c

  • Judy says:

    Thanks, I'll check it out. I think I used to know, but can't remember. Just having a rough day. I am grateful that I don't feel this way often!

  • Nadine says:

    I'm have a rash at corners of my mouth on the outside- it's not itchy just red and flared up- anyone else familiar with this?

  • drcarteron says:

    Usually "angular" cheilitis, and caused by yeast overgrowth and/or B vitamin deficiency.
    Very common in Sjogrens.

    dr c

  • Pat Andersen says:

    Perhaps 10 years ago, my wonderful ophthalmologist prescribed compounded, cyclosproine eye drops. I bought them from a compounding pharmacy in San Jose, CA. Recently, I called to renew my drops and was told that the FDA no longer permitted the compounding of these drops. WHAT? They are the only thing between me and ulcerated corneas. I called all over the country and found one pharmacy in CT who would make the drops, compounded in an emulsion, not oil. I tried them. $100/ bottle and $60 shipping/month. These drops form a white film over my eyes which lasts about 10-15 minutes, then they clear, and within another 20-30, my eyes feel dry again.
    I've contacted the FDA many times, with no answers or help at all. I can't be the only person in America who is dependent on these eye drops for continued good eye health? I've tried EVERY eye drop invented, including Restasis,sorry about the spelling, nothing works but the drops compounded by Leitner's Pharmacy. Please tell me what's going on and what I can do to preserve my vision.

  • drcarteron says:

    Compounding pharmacy Industry came under scrutiny in recent times (infectious organisms found in steroid preparations used for injection). Am sure you have discussed your options going forward with your Ophthalmologist. Will share this specific Eye Product story with the SSF (www.sjogrens.org), and see if Eye Care Experts can weight in further via Moisture Seeker's Newsletter or Blog.
    dr c

  • drcarteron says:

    Did pass along your Q to Elizabeth T, Editor of Moisture Seekers. She has added it to Q's to ask Optho Experts in Sjs to answer - dr c

  • Patrice says:

    For the last week I have felt absolutely drained. I have no energy at all.
    I wa diagnosed with Sjogrens in 2002 and I have been on Hydoxychlor
    Since then. I own my on business and work between 8-10 hours a day.
    I feel fine most of the time, but recently I can see a difference in my mobility
    And strength. It's becoming apparent that I am going to have to make some decisions
    As to reorganizing my work schedule. I can't keep up the pace because of the fatigue and sleepless nights. Dry eyes do occur often, and the dry mouth is always there. Sjögren's syndrome is not a easy life to live.

  • Sarah says:

    Has anyone tried biologics like Enbrel or Orencia for their Sjogrens? Has it helped? I'm on plaquenil and unable to tolerate methotrexate but am having increased symptoms and flares.

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