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Thread: Is this a flare? This all new for me...

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    Default Is this a flare? This all new for me...

    Being new to SLE I am confused about "flares". I am wondering if I am in/or was in one. I have an appt. with my Rheumatologist on the 28th. I was advised at my last appt to have some labs run a week or so before my appt around the 19th. On the 6th (all of this this month) I began to feel fluish. I do cakes for fun on the side and had two cakes going out on the 8th. The 6th and 7th was my normal work day about 5 hours and then baking and decorating is now a 14 hour work day. I never came down with a fever well I never checked but did not feel hot. After the cakes left early Sat morning the 8th I slept for the rest of the day. Sunday the 9th I worked my 5 hours and again came home and slept. My job is not physical. I do bookkeeping for a major grocery chain (part time 2 stores 4 days a week) and our famlies automotive shop. Monday still felt bad was freezing at the shop came home and the "flu" feeling felt worse. My hands were hurting soooooo bad. Nausea began. I got sick once that night it was coming out both ends. No appeatite for a few days. Last Thursday I woke up for work and my face was HUGE! My eyes were not just puffy on the lids but under as well I looked like a chipmunk storing food. Again Fri, Sat, Sun, and this Monday woke to the same thing. I did call my Rhuematologist on Fri but the girl on the phoned advised me to call my GP. Thought maybe I was over reacting so I waited over the weekend to see. I also tried benadryl as my face was very red and felt rough looked a bit shiny on my cheeks. Sunday and Monday wasn't as dramatic as the days fore but my rings were so tight. I called and got in yesteday with my GP. My blood pressure was 140/83 my norm. No major weight gain. He noticed mild adema in my face and legs. Did a urine culture came back in and asked if I felt I had a UTI. I have had many many over the years I just had one a few months ago so I know what they are all about. No I do not feel I have a UTI. He said he saw white blood cells and wanted to check kidney function.

    My last appt with my Rhuematologist we talked about Lupus Nephritis. We talked about adding Celcept to my medications. Currently 400mg plaqinel and baby asprin. I also take zoloft as I suffer from anxeity and panic attacks. She was waiting on a biposy result I had 1987. I did get a copy and it was suggestive of SLE back then but I had no positive ANA I was 13. I was in a nephratic (?) state for a long time I was on high doses of prednisone. They talked of chemo but dad said no i guess as they never did it. My dad needs lessons on caring for children by the way.

    My first set of labs showed my C4 was low at 8.8butC3 was normal but on the low normal 97.3. My egfr was 70. My results from last weeks tests I had them drawn the second day of my swelling. C4 was 9 and C3 was 85. My egfr was 67.63. Urine showed some red blood cells yesterdays dip stick test in the officce showed white blood cells. Creatine was 1.04 just barley above normal. I am pretty sure she will add celccept next week. I am still tired. A few hours of shopping yesterday left me napping for an hour and half yesterday. This is not my norm. I am just a bit confused and anxious for next week. Is this a flare??? Thanks so much.

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    a flare, by definition is.....
    lupus is active.

    unfortunatelly this means that everyone can have different symptoms of a flare.

    if what you have described is not the usual healthy you, then yes it could be a flare.
    sorry i cannot be more specific..... but everyone really does react differently.

    yes your symptoms do sound as if you have something happenning.
    and uti's are common when in a flare.
    fatigueing easier than normal is also sign that you could be in a flare.

    but you will need to talk to your gp, who took the blood samples to know if anything is actually happenning.

    it is so confusing, even for us oldies....
    flares are different for each of us, and can even show differently to one person.
    i have low level flares, and bad flares.
    they both present differently.

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    Steve is so right, flares vary so much even in one person, let alone across a board of people. My "usual" flare lasts 3 to4 weeks and renders me useless..pretty much bedridden, in agony, exhausted beyond belief...I feel like if I close my eyes I might just fade away and die. Then I have a slow recovery and it can take me a good month to feel better. Although I don't know what better is anymore..I constantly feel like shite if I'm honest. I wouldn't know what a symptom free period was if it slapped me in the face with a wet fish.
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    I tried participating here last night, and my poor brain did a BSOD on me, and I had to re-boot. Dadblamed fog... Anyway, my "flares" are constantly evolving (or is that "de-volving"??...). I started with just fatigue, swollen joints, etc. years ago, and got to where I could recognize one coming on. I got to a point a couple years ago where I didn't have a clue as to what was going on (OK, enough of the funny comments - I *still* don't know what's going on...) with my flares, and would be "surprised" when I'd have one. We *think* we know what had been happening with those, and that's photo-sensitive reactions oh boy... I've had "mini-flares", flares, and now I've had a couple "macro-flares" where I've had a rash that went into Steven's/Johnson head to toe practically. Like steve.b says, it's "sign" of lupus activity, and a flare's "character" will depend upon the level of activity of the disease versus the fighting power of the host (you), and the "re-inforcements" you can call upon (docs & supplemental meds). Sort of like snowflakes and fingerprints. Similar, but when you get up close, different.
    "There but for the grace of God, go I."
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    I really don't have much to add concerning flares-but I did want to add mmmmm.cakes!

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    Thanks to all for your insight. Yet I am still confused. If my Dr is most likely to be adding cellcept would that mean it's active? Would you see improvments with lab resluts such as completment numbers meaning they go into normal range?

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    The most logical answer would be yes, you would see an improvement in your labs. The problem is that Lupus is not always logical. Often times we, and the doctors, have to go as much by how we feel as we do by the labs.

    Good luck to you and please keep us updates
    Mari

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    Quote Originally Posted by tomcatsgirl View Post
    Thanks to all for your insight. Yet I am still confused. If my Dr is most likely to be adding cellcept would that mean it's active? Would you see improvments with lab resluts such as completment numbers meaning they go into normal range?
    I was so confused by flares. Still am if I'm being honest. I thought that I would flare then be completely symptom free inbetween and that it would be reflected in my bloods. As it turns out I have never been completely symptom free and my bloods have never changed...(until a new ANA thingy appeared recently) but I honestly thought the doc was printing the same results out over and over again!!

    I class flares as not being able to get off the sofa. Everything else may be disease activity but I can still just about get showered/do my hair, get to work and do 30hours in the office, eat relatively well with the help of my partner cooking, spend some time talking with family/friends...and thats it. That is my "normal" now...I never got what steve.b/rob/tgal meant when they tried to explain about having "a new normal." It took me a long time to get to grips with what is "new normal" and what is a flare. No one can answer it for you, not even your doctors or blood results really! This is why we have to be so in charge of our own illness.

    You'll figure it out and keep chatting here when you need us!
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    Well had my follow up. Cellcept was added and possible lisipril (sp). I have an appt with a new kideny Dr on the 17th. Will start off slow and go up to 2000 a day. I will continue with the plaqinel and baby asprin. I also take zoloft. I think I need a pill box! Nervous and anxious to start a new med but maybe I will start feeling better at some point. So thankful to my Dr (she's new) so glad I have a dx. Not glad at what it is but at least I know right. She was shocked that I have gone so long un-treated. My whole life really. I was 13 when my kidney disease first appeared. Moving on and forward...

    For those of you on cellcept have you noticed improvement in joint paint? Oh my aching hands she said my knuckles were squishy. I also have vascultis and the cellcept should help with my blue/purple dots. Have any of you gotten sick from taking it meaning colds and what not?

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    Quote Originally Posted by tomcatsgirl View Post
    ......she said my knuckles were squishy........
    the squishy knuckles are usually a sign of the inflamation that many of us get.
    your muscles fill up with water.

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