flare ups

[corso1102]

Does anyone know what may bring on a flare up? I have had quite a few in the past month and my doctor really has given any insight on the issue. Of course, there is always the Solu-medrol but I had a dose last month. Does anyone have something they may do to slow down the flare up? On Tysabri for the past five months and I have been told a flare up could mimic PML. Any advice?

[MrsBones]

When you say "flare up" are you referring to a temporary surge of existing symptoms that lasts a short while or actual relapses?

Since you said a few in the past month and you had a round of IVSM last month, I'm going to guess it's not actual relapse you're talking about, but one of 3 things: either they are pseudo exacerbations, the normal ebb and flow of symptoms you might experience during a relapse or they may be residual deficit from a relapse and they're part of your new normal.

If they're residual deficit, your best option is to talk to the neuro about symptomatic treatment. If it's still part of an ongoing relapse, which wouldn't be out of the question,you could still be recovering from the relapse the neuro was treating when he gave you that IVSM. Best bet there is to rest,eat well, exercise appropriately.... generally take care of yourself while the relapse resolves itself.

If it's pseudo exacerbation, you have some control over that. Many things can contribute to those. Stuff like hot showers, overdoing exercise and fevers, among other things. Learn what triggers them and just take whatever steps you can to avoid them.

How can you tell which is which? That's the tricky part.
It can takes months for a relapse to completely resolve. Until it does, you won't know what,if any, new everyday symptoms you'll be left with. You'll also have a roller coaster of symptoms sometimes until it does. They'll sometimes worsen and improve numerous times until they ultimately settle into your new normal.

PML does mimic a true relapse. However, it is still exceedingly rare, as scary as those numbers are. The best thing you can do is be vigilant. Keep a symptom journal if you have to,to remember what's going on when these "flare ups" occur. If anything that you have not experienced before happens, call your neuro ASAP. If anything you normally have worsens, call the neuro ASAP. Ask your doctor directly what they think these "flare ups" are and what you/he/she can do about them.

I hope my long winded answer helps.

[corso1102]

Mrs. Bones...thank you soooo much. The flare ups are previous issues...just worse. I will definitely try to change a few things in my day. I think I just need to come into the realization of my limitations

[MrsBones]

Mrs. Bones...thank you soooo much. The flare ups are previous issues...just worse. I will definitely try to change a few things in my day. I think I just need to come into the realization of my limitations

Any time! Don't think about them as limitations. "Improvise, adapt,overcome." - Clint Eastwood
They're just changes.

Do pay attention to those symptoms,though. Temporary worsening is likely a "simple" pseudo exacerbation, but if they worsen suddenly and stay that way for more than 24 hrs., call the doctor.

[roxinate]

Any time! Don't think about them as limitations. "Improvise, adapt,overcome." - Clint Eastwood
They're just changes.

Do pay attention to those symptoms,though. Temporary worsening is likely a "simple" pseudo exacerbation, but if they worsen suddenly and stay that way for more than 24 hrs., call the doctor.

This may sound silly/naive (I'm so very new at this MS thing), but why call the doctor? I'm under the impression that there is nothing medically that can be done for this other than the DMDs (which I am on Copaxone) but other than that, the neuro just tracks progress over time and/or provide medication for specific symptoms if needed/wanted. Am I missing something? I have a new symptom of severe pain (intermittent) in my thigh, mostly at night. I never thought to call the neuro and figured I would talk with him about it next time I see him. Am I being short-sighted?

[QuickType]

If symptoms last for longer than 24 hours, many people would consider that an actual relapse or exacerbation. Calling your neurologist has a couple of results:
1. Your neuro may offer a course of steroids to help diminish symptoms, or possibly other medications for symptom management (pain medication, muscle relaxants, anxiolytics, etc.)
2. Your neuro will (hopefully) document this relapse in your medical record so even if you don't receive steroids or actually go in, the information is there in case you ever apply for disability.

I document my intermittent symptoms and flares myself in a log and don't bother calling the doctor about them, but that's something I'm comfortable with personally. Other people may prefer to talk to at least a nurse when a new symptom or flare develops.

[MrsBones]

This may sound silly/naive (I'm so very new at this MS thing), but why call the doctor? I'm under the impression that there is nothing medically that can be done for this other than the DMDs (which I am on Copaxone) but other than that, the neuro just tracks progress over time and/or provide medication for specific symptoms if needed/wanted. Am I missing something? I have a new symptom of severe pain (intermittent) in my thigh, mostly at night. I never thought to call the neuro and figured I would talk with him about it next time I see him. Am I being short-sighted?

QuickType's reply is correct. A new symptom like that could very well be part of a relapse. Depending on the symptom you may want to do steroids to help move through the relapse more quickly or just ride it out. You could also ask about symptomatic treatments, either for the short or long term.

In the least, it's a smart idea to have it documented, not only for future disabilty applications, but also for long term treatment options. Keeping track of how your MS behaves wil help the doctor see patterns as quickly as possible and make any changes as soon as they are appropriate. Say your MS suddenly becomes more aggressive and Tysabri or even Novantrone is now your best option to keep it in check, unless your doctor has been made aware of those changes between appointments, months would go by before getting the better treatment.

I keep track of the usual symptoms' fluctuations myself (waking up stiff more days than usual, Uthoff's in cooler temps, that kind of thing), but anything that could be a relapse gets called in. I want my dr to be on top of things so that if I need to switch/add meds, symptomatic or DMD, it can be done as soon as possible, and not when my next appt is.

[roxinate]

Thanks for the education! That makes me feel better. I do log my symptoms myself daily/weekly. It's good to know some parameters re: calling the doctor. Thank you!

[spuffy]

good--

That's a good idea, logging. I can never keep track.

I have been pretty stable, just the minor constant deterioration. But lately, I've been feeling like there are bugs biting my face, especially my forehead. I actually washed my hair, thinking maybe it was dirty, but that wasn't it. (I'm really slow when it comes to recognizing flare-ups.)

So I'm going to report it to my dr. Most of my flare-ups have been itching of some kind.

I can live with all that, if I could just keep from scratching! I have scratches on my forehead now!

[rocky282]

Itching stinks

Spuffy, that is both funny and terrible that your flare ups are itching, I know it must be annoying, but what a way to be. I only had one itching eppisode that lasted for 3-4 days, everyone looked at me like I was diseased. It was kind of nice for them to leave me alone in one sense, but in the other it was SO HARD to not scratch my skin off.

Thank you for all the good advice folks, I too keep a journal which is more of my calender that I put how my day goes after it's over. I have not been calling the doctors office, but since I just applied for SSDI I will begin doing that as well. Seems like I have symptoms all the time. lol