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I'm confused on what a flare is


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#1 Kathy D

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Posted 03 April 2009 - 09:36 AM

I was under the impression that flares come and go, is that correct? If so, why have I had symptoms for so many months? Is this how I will always feel with this disease?

I started having severe fatigue a few years ago, began needing 10 +/- hours of sleep per night.

Last November, added chronic puffy hands and eyelids (and feet sometimes).

December brought more, now finger ulcers and sore, swollen, and snap crackle popping joints.

I am now on medications, prednisone, Plaquenil, NSAIDs, and a proton pump inhibitor. The proton pump inhibitor works wonders, but I don't feel much better otherwise.

Thank you for any input or suggestions :)

KD
Diffuse Scleroderma Diagnosed March 2009

#2 Jeannie McClelland

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Posted 03 April 2009 - 11:25 AM

Hi KD,

I think flares are supposed to come and go, but how quickly that happens is another thing that seems to be unique to each of us. Some flares (at least mine) can be pretty short-lived and every now and then I get one that will flatten me for a while.

The best way to I can think of to explain a flare, as I understand it, is to have you form a mental picture of a campfire. When someone throws a pine branch on it, it flares up. The fire is already there - it's not new - you are just getting more fire for a period of time.

Old symptoms that get worse and don't ease off, plus any new symptoms are definitely something to speak to your doctor about. I'd think having all the new things (not trivial ones, either) in the period from November until now is reasonable cause to be concerned.

I always give a new medication about a month and if I'm not getting any (or enough) relief, I check back with my doctor. I don't want him to start missing me! :rolleyes:

Warm hugs,
Jeannie McClelland
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#3 Margaret

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Posted 03 April 2009 - 11:31 AM

<<I was under the impression that flares come and go, is that correct? If so, why have I had symptoms for so many months>>

Hi KD ,

I am very interested in this answer also. I am calling this latest episode with Gareth's 'heart attacks' a flare but have found that not all Rheumatologists agree with such a term. This has been going on for 6-8 weeks now, 'heart attacks' and fatigue. Looking forward to 'hearing' the responses.

Take care, Everyone.
Margaret

#4 Jeannie McClelland

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Posted 03 April 2009 - 11:42 AM

Hi Margaret,

Do the dissenting Rheumatologists prefer 'exacerbation' or do they think that flares by any name don't exist?

Big hugs to you and Gareth,
Jeannie McClelland
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#5 Margaret

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Posted 03 April 2009 - 11:47 AM

<<The best way to I can think of to explain a flare, as I understand it, is to have you form a mental picture of a campfire. When someone throws a pine branch on it, it flares up. The fire is already there - it's not new - you are just getting more fire for a period of time.>>

Thank you.....makes sense to me!!!

#6 Shelley Ensz

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Posted 03 April 2009 - 02:15 PM

I know some rheumatologists seem to heartily object to the term "flare". So if you tell them you're in a flare, you'll get a scolding, particularly with scleroderma. I've heard some of them say that "scleroderma never flares."

Being a patient, I beg to differ! But of course, we are only patients, what do we know?!

For myself, I can say there are definitely times that I am much worse than others, that inflammation is more active or that everything seems to act up at once. And then there are other times when things seem to have settled down and are on an even keel, or at least, a more manageable one.

But since some doctors have "issues" with the word flare, I'd advise simply describing how you feel to the doctor rather than labeling it. For example, say you are more fatigued than usual, that you've had finger ulcers for the past month, that heartburn is worse, that muscle weakness seems to be setting in -- whatever it is, just plainly and unemotionally and without suggesting a cause (like "flare") state precisely what your symptoms are.

Then let THEM use the nasty "flare" word if they have it in their vocabulary. But don't get into a screaming match over whether or not it is "possible" to have a "flare" with scleroderma! Some doctors have their pet issues and we can't change that. However, we can work around it by not saying things that set them off, and I've heard enough patients suffer through bad reactions on the "flare" word that I'd recommend none of us use it in the presence of a doctor.

Just among ourselves, where we understand!
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Peggy

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Posted 04 April 2009 - 05:29 AM

I think this topic of "flares" is about as confusing as if we ever go into or what is "remission". It seems like everyone has a different take on both of these.

My first rheumatologist doctor told me the first 3 years are the worst when the disease would be rampant. Now I have a new doctor who hails form John Hopkins, so he knows his stuff. He says that the first 2-5 years are the worst.

It's also hard to tell when you start that timeline, because when did this disease actually present itself? It's so hard to tell. If I go by when I actually got the confirmation of what I had (which took a year), I an now in my 2nd year and will start my 3rd on August.

Well I am continually in a flare then too. I am always tired and there is no letting down of the terrible muscle pain and I still suffer from reflux attacks that I have to use the GI cocktail on. The one good thing is that the Cellcept has made my skin softer and I can pinch areas again. Oh, and also my lungs were a little better so we'll see if that is still the case when I go again in May and have another PFT. But then there's that lung nodule that I have to worry about. We'll see what the oncologist has to say about that on the 15th of this month.

So from just my perspective I think our disease is flaring in some aspect or another all of the time. But I say that because I'm still in my beginning years (I think). Confusing, I know.

Warm hugs,

Peggy