Question About Flares

[snoweye]

Hi,
Does anybody know if flares are always a feature of SS?
And how long have others here gone between flares?

I know many people develop SS gradually although I have read about a few exceptions on this forum. The initial onset of my SS symptoms were very sudden and could certainly be described as a flare. But since then I have not experienced any periods of sudden significant deterioration.

I am curious how that fits in with the experience of other members. Although one thing is clear after reading many posts here, SS affects people in very different ways.

Thanks.

[irish]

I have had my Sjogrens and some of my other autoimmune diseases for 50 years. I started out with smaller events of poor health and would end up going to the doctor. I generally am not into calling them flares as it seems like I always had something going on that affected my health.

My whole third pregnancy could probably be considered a flare as I was very sick with so many ailments and my MIL didn't think I would live through the pregnancy. Through out the years I had my many ailments and always had a doctors bill to pay. Then in the 1970's I would have periodic spells of more severe illness. I would have to take leave of absence from work or quit my job at times. I would take time off and rest up and soon be back to work.

I still have problems calling them flares cause my life is impacted by things that make my life miserable much of the time. I think it is up to the person to call it what they want and to identify their own flares I guess. There, I wasn't much help was I.!!!!lol Irish

[Linda196]

Irish, i must agree with your whole attitude about flares! In diseases marked by waxing and waning symptoms, as almost all autoimmunes are, it's really difficult to know what constitutes a "flare'. There's another thread in the forum regarding "remission" and I feel the same way about that.

My practice is to put changes in the way I feel, be it better or worse, up to the natural flow of the disease, unless they last weeks(not days) and demonstrate a clinical improvement or deterioration (changes in Sed Rate, CRP, etc). If I were to treat every change with the appropriate change in medication, I'd be changing a couple of times a week!

The one exception I make is with Polymyalgia Rheumatica (PMR). I don't treat it on a continuous basis, since I'm already on daily low dose Prednisone, but when I feel the unmistakable signs of "flare" or "recurrence" (for me: extreme stiffness and pain in hips and lower back, fever above 40^oC and increased weakness in the upper arms) I immediately revise my prednisone dosage to the burst and taper upon which my doctor and I have agreed . My experience has shown that, for me, once PMR gets started it doesn't relent without treatment.

The other factor that I take into consideration is that, in the past, when I've thought i was dealing with flares, for example of Sarcoidosis, it was actually Sjogren's or Dermatomyelitis establishing themselves, and a flare of Sjogren's turned out to be the onset of PMR. At least so far, flares of PMR haven't actually been pending new diagnoses LOL

Your last paragraph saus it all , in a disease with such variances

I think it is up to the person to call it what they want and to identify their own flares I guess.

[Wal]

My symptoms are pretty mild compared to many here. My dryness symptoms came on suddenly altogether within an hour one year ago this month. My mouth was very dry at onset and after 6 months got much better. Now it's mildly dry with an increase in dryness every now and then. I call those increases flares and I don't know what causes them. My eyes weren't that bad at onset but got progressively worse over last year until I could no longer wear my contacts. I recently did a round of steroid drops and started Xiidra and my eyes have stabilized for the most part (still can't wear contacts). I do have eye flares where my dryness increases and I'm gritty and itchy. I'm in a flare now. I'm not sure all the reasons my eyes flare but one is the cold warm weather flip flop we are having here in South Carolina. The heater and cold outside is also making my sinuses more dry than normal. I'm waiting it out and hoping this flare will go soon. I couldn't imagine living up North.

[belovedchaos1]

I agree with everyone on here. What each individual would define as a "flare" would be something that they themselves would recognize as an increase of their symptoms. I think only with time and reacurring experiences - would a person be able define what a flare means to them.

To answer your question though, flares are not just limited to Sjs, but are unanimous through out all autoimmune conditions. The reason being is that autoimmune conditions are all connected by one linking factor: increased levels of inflammation that doesn't decrease as it should normally and which then causes destruction to tissues and structures. A diagnosis is based on what structures are being affected... Sjs (mucus/pleural membranes/glands), rheumatoid arthritis (joint tissues/fluids) and so on. It's hard because an increase of inflammation is systemic- meaning throughout the body... it doesn't discriminate- and so why autoimmune conditions/symptoms tend to overlap.

A flare - is anything that causes those symptoms to worsen or to cause inflammation levels to spike again... and that is very specific to each person as is length and remission periods. I hope that helps!

[snoweye]

Thanks for your replies and sharing your experiences.

The consensus seems that is no universal definition of flares and the variation of disease activity varies from person to person.

[warmwaters]

Thanks for your replies and sharing your experiences.

The consensus seems that is no universal definition of flares and the variation of disease activity varies from person to person.

Agreed. I mostly have a continuously shifting level of energy, pain, and other symptoms.  "Expect the unexpected" is a motto.  There are times when I have so debilitated for a week plus, that I would call "flares".  For me this translates to being able to do little other than eat, sleep, and make a cup of coffee for 1-2 weeks.