When is a flare a flare?

[goodsea]

I know, seems like a dumb question. After 16 years, I feel like I'm always discovering something new about this disease.

When I was first dx'ed, it was eyes, optic neuritis. And subsequent flare were eyesight related. And yes, there is permanent damage to the optic nerve so I'll never see *perfectly*, but for the most part, I can see and it's my "normal."

It's only been more recent (2-2.5 years ago) that I started tripping, falling. There are lesions on my spine, of course. I have that feeling sometimes-- the heavy legs, the rod strapped to my leg, making walking difficult. I rest. It helps. End of day, much better (????) When this first started, I had a med switch from Betaseron to Extavia, which at the time I was told were exactly the same. But I swore that that's when the walking troubles started. My dr. pushed insurance that I needed Betaseron (I can't remember now, but I think he had MRI to back it up), so I went back on Betaseron, and you know what happened? I was better. I also went on Ampyra somewhere during that time, so it's muddy. Then I had one new lesion on last MRI so dr. switched me to Gilenya. And I swear, from that point my walking's been worse, even on the Ampyra. Sometimes better-worse, sometimes worse-worse, if you know what I mean. The barometric pressure falls, rain storm coming in and EGADS!!

And I'm fumbling for answers. I know Betaseron is a DMD, so shouldn't *really* affect symptoms. I know correlation is not causation.

And because the walking issue is "new" in terms of the time I've had MS, I also wonder, is this a flare? Or is this a new normal? Some stiffness became normal, but the last 2 days have been terrible. It's so easy (and desirable) to look at outside circumstances and say...that's the culprit! Change the culprit! When is it labeled just a "flare?" And is this a flare? My next MRI is in Sept., so I know that always provides some insight.

Oh, and secondary question: has anyone seen such a marked difference on switching DMD?

And I know. MS is unpredictable. It's ambiguous. I scramble, perhaps in vain, for answers. {sigh}

[headrift]

Betaseron and Extavia are both interferon-1a DMDs... I haven't been on either, but I imagine they should be the same as they are the same med. Was there a dosage difference?

As for a flare, I think most of what makes them a flare is permanence. I had a flare-up of optic neuritis a few months ago, and my sight is about back to where it was after several solumedrol infusions. I don't think it would have gone away as well without it, so in the end it was just a flare.

A difference is in my walking. I've been diagnosed for a little over two years, but was in a "self imposed" limbo for about a dozen years before that. In that time, my ability to walk got slowly worse. Sure, it got better after I rested up each time, but it was always worse the next time.

...so the walking (and I guess the double vision) was a gradual worsening of symptoms. Each "flare" made it worse. If you want, you could talk to your neuro about changing DMDs... the biggest thing that brought that along was the new case of optic neuritis. To me, if you get new symptoms while on a DMD, it's the wrong DMD. That's what got me away from two years of Avonex and into Tecfidera. The interferon (Avonex is an interferon-1b) that I was on would mess me up for a day or two even worse than normal.

That's probably an incomplete answering of your questions, but there's my take on changing DMDs.

[goodsea]

Oh and By the way...

I don't mean "just" a flare. Because flares are horrible unwelcome visitors. My apologies for saying it that way.

[jreagan70]

The working definition of a flare/attack/exacerbation is the onset of new, or worsening of existing, symptoms lasting at least 24 hours in the absence of fever or illness. Level of recovery is completely irrelevant to whether an episode is a true inflammatory flare. People can and do have flares that result in complete recovery.

The definition of a flare is a bit loose. The 24 hours of symptoms is an old, lingering definition that should probably be changed, because it defines a flare only by symptoms. A true flare is an acute inflammatory event, which can't be determined solely by symptoms. No inflammation, no flare. That bears repeating. No inflammation, no flare.

Even symptoms that last longer than 24 hours might just be the normal ups and downs of symptoms, without inflammation, when someone's symptoms have an established pattern of acting that way.

Fever, illness, and rises in body temperature can cause false flares, also called pseudoflares. There's an increase in symptoms, but they're not caused by inflammation. So they aren't true flares and do no damage, no matter how bad you might feel during a pseudoflare. Pseudoflares can last longer than 24 hours, which is what makes the 24-hour and symptoms-only definition of a flare faulty.

As far as symptoms go, certainly if you're taking a medication that makes you feel crummy, normal symptoms can be harder to put up with, so it seems like the medication has made the symptoms worse. They may not actually be worse, but you have lower tolerance and less energy for working with and through them.

I felt SO much better when I stopped taking Avonex and Rebif. I felt better on the mix-it-yourself version of Avonex than on the pre-mixed. I felt SO much better when I stopped taking several different medications I was on for MS. I still had my usual symptoms, but they didn't bother me as much.

MS flares -- and I'm referring here to true, inflammatory flares -- come on over the course of hours or days. They present in distinct episodes, not long-term slides of worsening. If you think the worsening of your symptoms over the last two days are a distinct episode that's different from any of your usual ups and downs of symptoms -- and you aren't sick, don't have a fever, and haven't been exposed to any unusual rises in body temperature -- you may be having a true flare.

To determine if you're having a true inflammatory flare, you might need to consult your neurologist.

[goodsea]

Betaseron and Extavia are both interferon-1a DMDs... I haven't been on either, but I imagine they should be the same as they are the same med. Was there a dosage difference?

In terms of the Betaserson/Extavia switch, it wasn't different dosage, but ultimately my dr. said there's a (something like) <.1% chance that this happens. It was so unlikely, that he hadn't brought it up. But when I went back on the Betaseron and everything was good again, he said it.

I honestly think this has something to do with my body's reaction to any *change* in medicine. Don't even know if that's a medical phenomenon, but I swear that every change or new medicine brings on something else to think about, and I don't mean side effects. I mean general changes in my existing MS symptoms. For the most part, I was stable on Betaseron. It was an MRI with the one new lesion that prompted my dr. to make a change. And honestly, I was so sick of giving myself a shot and the idea of oral was tantalizing (Gilenya), so I said okay. He said I could take the risk of getting more new lesions by continuing on the Beta, and who knows what that could mean. Put it that way, it seemed prudent to change.

Thing is, these aren't new symptoms. It's just change, and here they come again.

Ugh! This disease sure is a mystery, isn't it? Thank you so much for sharing your thoughts.

[goodsea]

Thank you

Thank you, jreagan for your response. It is very helpful. I did contact my neuros office this morning and was told he isn't in this week, but could come in to see a nurse practitioner, which I may do.

As I mentioned to headrift, I'm beginning to think that any change in med brings about this response. I was pretty stable on Betaseron, only changed first time bc of insurance drop, then back on due to Sx, and then change to Gilenya based on new lesion on MRI and dr. rec but no new Sx.

I also had something *weird* happen, which was dr. ordered a TB bloodtest in a whole panel of tests for the *possibility* that I may need it for a future med. Not present, but future possibility. And to my genuine surprise, I had latent TB. ??? That was a darn whirlwind but the infectious disease specialist put me on Isoniazid, very strong antibiotic to be taken for 9 mos. BUT... suddenly my Sx grew worse and I Googled side effects and one of them is wobbly walk, balance issues, etc. WHAT?!?! You mean I have to take this med for 9 mos. for a medicine that I *could* go on? And side effect is Sx I already deal with? Plus, there was a low possibility of drug-induced lupus. (yay!) So my dr. took me off after 2 weeks, but nothing changed. And she said, since I'm a low risk person not to worry right now about TB. *&%+!!*!!!!!

So who knows? I understand fully how dr.'s respond to MRIs and taking a prudent route to long-term care, but right now I'm left feeling like mine are treating the data not the patient. And really, it's a subtle difference but it's still a big picture consideration. I'm left feeling like I need to trust myself more.

BTW, is 70 your birth year? Mine too, if so. In fact, it's my birthday month, LOL!