Hi All,
Curious how long a "typical" flare lasts? Hours, Days, Weeks, Months....
And if it is triggered or exacerbated by anything; hormones, stress, moon cycle?
My experience is that there's no "typical". It can be a week or two, or it can be 6 months. Sometimes it's abrupt, and sometimes I will realize I haven't had a good day in a long time.
I'm sure others have different experiences.
For me, there are seasonal elements. Winter is usually my worst time.
My flares usually last about 3-4 days, and I intervene with Methylprednisolone, Gabapentin and Benadryl which seem to ease my symptoms.
For about two weeks now I am in a sort of 'rolling flare' with one right after another. I wonder why and which organ/system is being attacked by my Immune Disorder.
I am up now, at 4 am, depriving myself of normal sleep to prepare for my 'sleep deprived' EEG later the morning.
Ain't we got fun!
Hugs, Elaine
I am having my first flare now. started 3 weeks ago, after 2 weeks I took a week off work of annual leave but it didn't help so went to dr and now on 3rd day of 10 day steroids. Hope this does the trick.
Cheers
Jo 😀
I maintain a pretty constant state of sicca symptoms; however in a flare everything is worse. I'm in one now. I'm not sure how long the flares are on average as they change. Sometimes one thing flares while another is mild. About once a month or once every other month I have one to three days of almost no symptoms. It's bizarre. I think sugar is a big trigger for my dry mouth. Not sure about eyes yet. I went swimming almost two weeks ago and used lots of sunscreen on my face the whole weekend and had a bad eye flare start that Monday. It lasted 10 days and just started calming down yesterday. Now my mouth is bad...probably because I ate lots of sugar yesterday😕
I allow for a certain amount of ebb and flow of symptoms, so for me a couple of days of increased dryness, more than usual joint/muscle pain, or fatigue that resembles narcolepsy, doesn't really make me think flare. If a group of symptoms is consistently worsened for a week or so, I think flare and increase my Prednisone.
If it's a matter of just a few days until an already scheduled doctor's appointment or routine blood work, I will wait it out, mostly for documentation sake. By waiting, particularly for blood work, I can see if my version of flare actually causes changes in levels, and it usually does send my CRP up. There are times when blood work scheduling coincides with "down days" when I'm just feeling the discomfort more, and wondering if I'm starting a flare, but find within a few days after the blood test that it resolves, and on those results my CRP is steady at its' usual level of moderate elevation (hasn't been normal in 20 years). As a reference, when I have bloods done in my usual state of "usual" dryness, aches, pains and fatigue, my CRP runs 12-18 (normal range 0-10). In a flare, it can jump to 30 within days.
As to duration, I'm not sure how long a flare would last for me without treatment, because I have the Prednisone and increase it as needed, so a flare usually responds within 3 days to higher doses, sometimes the first day!
Have been in a flare since January....definitely the longest I have ever had. After a while, it can really get to you, so hoping I get a break sometime soon ::)
My reaction to the term "flare" is different than most. I lived for so many decades with "conditions" or "infections" or "flat on my back" times, I still think of flares associated to those conditions. Diagnosed close to 3 years ago, I am beginning to adjust to the fact all those things were associated with Sjogren's thus were flares. But........to answer the specific question, mine last (on average) a matter of days. As more conditions/organs/areas were affected by the disease, I have experienced certain conditions which can hang on until I have medicinal intervention (or ER, whichever comes first).
I separate the fatigue from actual flares as I consider that to be part of what SjS is. My fatigue can last days or weeks though. I wonder if members consider fatigue as a flare.
As to Lori's post (flare since January) I can say I did have a costochondriasis attack which lasted over a couple of months. I didn't intervene in the first couple of months because the pain was manageable. I still don't know whether to intervene early (minor discomfort) or wait patiently. I say this as in the decades prior to dx, I would have the condition (undiagnosed that is) and the pain would subside anywhere from 3 days to two weeks' time. Back then, it didn't ramp up to the degree I can suffer now.
Hope you find quick relief.
Sjoldier c3
My flares seem to come and go all the time. Usually, around 3-4 days. I seem to flare all the time in the summer. Going crazy right now. I will feel ok for a few hours, then a sudden wave of illness hits and I feel like Im dying.
The heat and allergies really set me off.
Really cant doing much for it either. Take a bit more Medrol.
Gursie
Quote from: Gosford on July 14, 2016, 05:58:16 PM
Hi All,
Curious how long a "typical" flare lasts? Hours, Days, Weeks, Months....
And if it is triggered or exacerbated by anything; hormones, stress, moon cycle?
Sjogrens systems can be divided into:
Glandular symptoms arise due to lymphocytic damage in lacrimal, or tear-producing, glands; and salivary, or saliva - producing glands.
Extraglandular symptoms occur elsewhere in the body, and the list is extensive:
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/
So a 'flare' can present along a spectrum of symptoms per individual patient, stage of disease and treatment protocol. Periods of remission.
A brief symptom Diary (just notes to yourself) will over the course of time help you see what your individual triggers are.. given your lifestyle, location, environment, hormones (menses). Then you can decide how to make personal choices from there.
Flare for me is when my 'quality of life' decreases. The notes will help for preparing for Dr. appts as well.