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View Full Version : What is your flare protocol?



SleepyInSeattle
11-12-2012, 09:24 PM
I'm looking for advice and information...last night I had my first full-on flare since I was diagnosed and have been getting treatment. (I lost my hearing in one ear to autoimmune stuff back in April, but I didn't feel bad then, other than the loss of hearing).

I don't know what triggered it - could have been one or a combination of a few things...I guess it doesn't really matter, other than trying to avoid them again, which I will (I had a nasty fall on the back steps - dang frost! Aaaand I accidentally ate stuff with milk in it, and the weather changes, and I had a late night, etc...).

ANYHOO - it started with a headache yesterday about mid-day, and by 8pm I was a mess...I just CRASHED. Full-on flu (without the fever) - you know the feeling - epic fatigue, achy all over, brain fog like crazy, can't regulate body temp, swollen finger joints/clumsy as all get-out, etc. I was flat-out on the couch, and thinking I'd have to go to the E.R. if it got any worse, just because I was wondering what on earth would make be feel so horrible when I'd felt excellent 9 hours before. (Duh....LUPUS/SJS!)

I ended up taking my Methotrexate one day early, and that DID help....hard to believe taking poison could make you feel BETTER, but it really did help. And then I slept 11 hours, and today was...eh. A BIT better, but not a lot. I ended up taking Ibuprofen twice during the day, which I know is not good with the Mtx, but I had to take SOMEthing!!!!

So WHAT DO YOU DO when you have a flare?

I know I should have called my doc and gone in, but I had to work and my MIL flew into town this afternoon so I had to go get her at the airport, etc. I have had little "mini-flares" where I felt cruddy for a few days here and there, but nothing like this. I really CRASHED last night. Sucks to be reminded of how bad this stuff can be.

I will call the doc and go in, but I also kind wanted to know how you guys cope with flares....do you have medication that you take immediately to deal with it? Do you always go in to the doc?

Any advice is greatly appreciated....thanks.

steve.b
11-13-2012, 04:28 AM
talk to your doctor about an emergency plan.

i have a set amount of steroids i can take without calling him.
it is for times when i flare. (my plan includes dosages and wheaning down proccess)

jmail
11-13-2012, 03:41 PM
Same with me, as what Steve does. I call the docs' offices, and which one(s) is dependant upon what the flare involves.

Mica
11-13-2012, 03:56 PM
I'm like Steve, upping my prednisone for a couple of days usually helps.

deannegirl
11-13-2012, 09:25 PM
So reading this thread and the replies I'm seeing so far, I definitely should consider calling my doctor more often. I tend to suffer through symptoms of severe flare, "lupus flu", extreme joint pain and swelling to the point that I can't drive and can barely walk up stairs, fever, extreme malaise and fatigue for weeks and weeks and weeks before I call my rheumy with the "enough is enough"! So far I've had 3 flares lasting 1-3 months each this year and I've called him once for a 6 day prednisone pack.

I guess my hesitation stems from not wanting to seem like a complainer, like I can't "tough it out" and based on knowing that there are countless other Lupus sufferers out there who have it worse than me!

It's tough. I think I may make an appointment again in the next few weeks so he can follow up on some of my symptoms from the last few months and decide what to do. There's of course a part of me that really just wants to avoid the daily prednisone regamine that I'm sure he's going to recommend as long as possible. But I have to balance that wishful thinking with the need to be able to continue to function every day and not get so sick that I can't work or take care of my daughter. : /

Long story short, don't follow my example SleepyInSeattle, call your doctor right away and see what he can do to help. Hope you feel better soon.

steve.b
11-14-2012, 06:10 AM
So reading this thread and the replies I'm seeing so far, I definitely should consider calling my doctor more often........

having the steroids available, does not mean that you have to take them.... it offers an option.
i have gone 2 years without taking them. but they were there just the same... just in case.

SleepyInSeattle
11-14-2012, 09:26 AM
I also tend to "tough it out" as my normal mode of operations...but now that I know the diagnosis, I am afraid that there is internal damage going on during flares and I don't want to let that happen. I am trying to be responsible and take care of myself properly, but yeah - it DOES feel like "being a wimp" and complaining. :-(

I will discuss this in depth with my doc.

Thank you all so much for helping me sort things out!

tgal
11-14-2012, 12:31 PM
I have tried to answer this I don't know how many times and always end up closing the page. Early on I was more upfront with my own situation but now I worry more about worrying people because I am "lucky" enough to have a very severe form of the disease. Most people won't end up like me and I don't want to scare new people so I tend to be quiet on topics like this however I feel the need to speak out about trying to "suffer through". "Suffering through" is partially what got me to where I am and that is in a place of an almost constant flare for over 2 years. Yes. You did hear that correctly. If I am lucky I have about 3 good days a week. I have been able to get my steroids down to 40mg a day with MTX weekly and a steroid shot every 3 months ( as well as 8 other meds every day and that doesnt count optional meds for pain) just to try and make life livable. I finally gave in and have pain pills and muscle relaxers now which do help but because I "suffered through" and could "be tough" I allowed this disease to ravage my body instead of getting control of it earlier.

Part of it was my fault. Early on I didn't know what I had and didn't go to doctors and then when I did know it was a form of Lupus (long story) I didn't want to be a whiner so I suffered and went to regular appointments and let it eat away at me. The other part was not my fault. I lost my job when the seizures started in full force and I didn't have insurance for 2 1/2 years so basically I had a doc who gave me meds to try and keep me from getting worse but even with that the disease was still winning. Only now was I granted my Medicare and after the first of the year I get to start going back to real specialist to actually treat the disease instead of just tossing more steroids and pain meds to make me survive.

the point of this post is that you deal with a flare by calling your doctor and getting treated because a flare is telling you that Lupus is attacking your body. It isn't just attacking what you can see. It is attacking things you can't. For some of us, if you let it attack too long so you appear "strong" you end up in a flare that can't be controlled or with damage that can't be undone. Please don't do that to yourself. I promise it isn't worth it

SleepyInSeattle
11-14-2012, 06:11 PM
Mari, thank you for sharing that...it really is hard, as a "newbie", to make those judgment calls. What you experienced is exactly what I was afraid of...that there's a lot of damage potentially going on below the surface that I may not even be aware of.

It feels like I'm always juggling - the damage from the disease, or the damage/inconvenience/cost of the drugs (especially steroids)? You know? And I just don't always know how to manage that. And of course I rely on my doctor, but I also don't want to just blindly follow what he says, because he's just one person and won't always be correct, and because it's MY BODY - I am ultimately responsible, and I am the only one who knows how I feel inside. So I ask you guys for advice, and do my own research, etc.

My gut was saying what I didn't want to hear - the same thing you're all saying - which is "call the doc and take some *(&%^%$ pills..." - I think that is right.

It is hard, learning to become a new person and not do things the way I always have - to really internalize that this is NOT something to be messed around with...that I am constantly in the room with a loaded gun. I was brought up to be tough and not complain and not make a big deal out of things, and it's difficult to break 45 years of that - heck, GENERATIONS of it! It's easier to play mind games with myself and minimize what's happening because I don't want it to be a big deal. I think I am a smart person and generally make decent, rational decisions - but this chronic illness thing is a tough nut to crack.

So thanks again....man, what would I do without this group? It makes me so sad to think of all the years that people had to deal with this all alone...

deannegirl
11-14-2012, 09:15 PM
The point of this post is that you deal with a flare by calling your doctor and getting treated because a flare is telling you that Lupus is attacking your body. It isn't just attacking what you can see. It is attacking things you can't. For some of us, if you let it attack too long so you appear "strong" you end up in a flare that can't be controlled or with damage that can't be undone. Please don't do that to yourself. I promise it isn't worth it

This post nearly brought me to tears Mari and was very moving. Thank you SO MUCH for being open enough to share. I think you finally scared me in to really taking my symptoms seriously and calling my doctor TOMORROW.

I experience severe symptoms 4-5 days a week, nearly every week the last year, with only about a 6 week relapse after my last round of Prednisone in June. My symptoms cause me to have to "work from home" nearly 15 days out of 30, make it difficult to drive, to do house work, to even get UP off the couch. I have crushing chest pain, debilitating fatigue, fever, mouth sores, rashes, malaise...you name it. I really need to wake up to the fact that this is not "just how it is", this is a flare and I need to ask for some more help.

Thank you.

tgal
11-14-2012, 10:09 PM
I know the meds are scary but just remember this... If you go to the doctor when things start and take them for short periods of time or on very low doses just to get the disease under control you will have fewer side effects from them then if you let things go too far And they have to give you large doses for very long periods and/or move on to even stronger drugs. Yes, the drugs can be harmful but not near as harmful as the Lupus most of the time.

Thanks for understanding that I am not trying to be preachy. We all have to do what is right for ourselves. I just hate the idea of anyone going through what I have if it can be helped