Author Topic: Question about flares  (Read 250 times)

Deb 27

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Question about flares
« on: December 28, 2019, 11:30:19 AM »
So, if you just had dry symptoms without fatigue or joint pain etc, would you call that a flare??? And do you have to have dryness in more than just one spot to call it a flare??

I've been awfully dry lately but no joint pain, so I am wondering.

I hope everyone had great holidays!!!! Here's to a happy, healthy 2020!!!!!!!!! I hope it's going to be better for us all !!!!
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irish

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Re: Question about flares
« Reply #1 on: December 28, 2019, 12:37:03 PM »
I have no idea what a flare is to be honest. I have aches and pains and many other issues every day. It changes from time to time. I never called them flares  until the past 6 months or so. I have no idea what else to call them so I gave up and now call them flares after many, many years.

I have really never been without symptoms in some shape or form so am just used to putting up with them. Some days are worse than others and then there is the fatigue which has come and go for about 50 years.  I have 5 autoimmune diseases including Sjogrens so I find it hard to sort things out. Most people with Sjogrens probably have more than Sjogrens but it just hasn't been identified. The symptoms overlap so much. Sooo, I guess what I am saying is that we can call our misery what ever we want. Take Care. Irish

markt

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Re: Question about flares
« Reply #2 on: December 28, 2019, 05:22:34 PM »
I have severe occular/oral dryness, low C4 Compliment and positive SP1, PSP, CA6 antibodies.  My oral dryness is well managed with Rituximab....the dryness, especially basal night time saliva production gets worse when the useful life of the infused antibodies wanes and I'm due for more Rituximab.

 So, for me atleast... dry all of the time...(especially as my B Cells rebound and become activated by inflammatory proteins produced by my glandular epithelium....but much better with continued systemic intervention.  Can't say it gets worse or flares...

Eyes are dry no matter what.. I've failed treatment with Cyclosporine drops, lotemax, etc.  Lacripep, (and RegerEyes to a degree) has been the only game changing medication, tho being a trial medication, it's not dependably available for most of us.  Even now, I still rely mostly on special contacts. 

When I first fell I'll, it was rapid, debilitating, and shocked my body. I lost about 25 lbs over 2 months (I was 6'1 / 170 at start)...laid stationary on my couch alternating icebags on my eyes and keeping them close.  Developed a flu like fatigue/malaise and literally dried out over a night or two...I felt like a bag of dust and had trouble swallowing. Minor joint pain came later.  My over the top initial flare is what helped me get diagnosed quickly.

No more flares like this in my 3 years of being "sick."
« Last Edit: December 29, 2019, 07:10:59 AM by markt »

Linda196

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Re: Question about flares
« Reply #3 on: December 29, 2019, 04:05:47 AM »
This whole process seems to have an ebb and flo pattern anyway, so an increase in any one or two symptoms, especially is it resolves or returns to baseline fairly quickly, isn't something I'd call a flare. For me a flare is a marked increase in several symptoms that persists for a period of time, a couple of weeks or so, and when it starts to resolve, resets the baseline to a higher level. I feel better when it's over, but slightly worse off than before it happened, if that makes any sense.

Another marker of a flare, for me, is an increase in lab values. There have been occasions when my Rheumy asked if I was flaring before I admitted it to myself, because my CRP would have doubled between checks, or I've noticed increased joint pain, but ignored the increased heat or redness in the joint.
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irish

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Re: Question about flares
« Reply #4 on: December 29, 2019, 09:14:25 PM »
Thanks Linda for that info. I guess I may have some flares but generally just feel lousy much of the time. Lousy gets to be the normal event on every day basis so I guess one just adjusts to that way of living.

I do know that I had one time about 15 years ago when I felt so darned good for about 3 hours that I vacuumed, washed clothes and really cleaned the house. It was like being 25 again. Stupid me....hubby told me I was going to pay for that activity. I did, It lasted just those 3 hours or so and I was down on the couch for the next week. I never got that stupid again. Irish

susanep

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Re: Question about flares
« Reply #5 on: December 30, 2019, 12:04:35 AM »
I told my daughter in law tonight that when illness is going around I hardly notice the difference due to feeling so bad every day.

susanep
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vrystaat

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Re: Question about flares
« Reply #6 on: December 30, 2019, 12:44:17 PM »
I have just gone through the worst flare in ages, so I'll add to the post.

Ten days ago, I started with a bad headache and stiffness. I was sure it was the flu, because a lot of people did get a bad flu episode in December.
So I hesitated doing my doctor ordered regime. As I felt sicker, this happened:

. Increasingly severe fatigue and feeling ill over the next week
. Fever of 98.9 to 99.9 degrees
. Severe muscular pain in my legs & arms
. Sore parotid and submandibular glands
. Bad eye pain & swelling
. Abdominal pain
. Insomnia

I realized that I was getting a flare-up and started a Medrol Dosepack (Prednisone).
I slowly got better and now, 10 days later, I am feeling OK.
All this was very scary and mysterious, and my Rheumatologist had no specific input.
I am due for IVIG, but as usual it is very hard to get scheduled.
No physicians seem interested anymore. As usual with MD's, the sicker you get, the more they try to dodge you.

If anyone also gets these episodes, please write to me for for comments. My worst problem is Sjögren's-associated Acute Polymyositis.
I have become severely disabled.

Please keep up the good work everybody.
« Last Edit: January 06, 2020, 04:45:56 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

araminta

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Re: Question about flares
« Reply #7 on: December 30, 2019, 01:00:53 PM »
I'm glad this topic was raised as I too have always wondered what a flare was.

My dryness is constant, I feel tired all the time, but have the occasional day or two - rarely a few days - when I am a bit less tired and feel I can do some exercise.

Various other symptoms come and go all the time - labyrinthitis/IBS/joint pain/insomnia/skin problems.

So nothing that seems like a flare as described by some members here.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

sixty

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Re: Question about flares
« Reply #8 on: December 30, 2019, 06:51:40 PM »
To me a flare is much more than normal.  It's actually been about 10 years since I've had one tho and I think I'm pretty lucky.  I've woke up in the middle of the night with such added intense pain that it hurts to move just an inch.  The pain is excruciating and the fatigue is just as bad.  It's accompanied by sore throat, severe thirst, sometimes fever, and lung pain.  I also had involuntary stretching.  My flares never lasted more than a day and I think that's lucky also.  Anyway, I saved my written description of it and I noted I had three flares in one week that last time.  Wow, I wonder why they stopped, and I'm so glad they did. 

irish

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Re: Question about flares
« Reply #9 on: December 31, 2019, 12:31:33 AM »
sixty, Thanks for sharing that as it is really interesting. The symptoms you had were somewhat unusual...also the stretching is something I have never heard with a flare. Sure hope you don't see anymore. Irish