Results 1 to 4 of 4

Thread: HI to all~ just had my first flare

  1. #1
    Join Date
    Nov 2006
    Location
    Northeastern PA
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default HI to all~ just had my first flare

    I wanted to say hi to all here! I've been reading the posts here for over three weeks now and I thought I really should say hello to everyone..My name is Aggie and I'm 34. I have three kids and a great husband who is a very funny man so I get through alot by laughing..

    I've had Lupus symtoms off and on for a few years now, my body would be bad but my blood work was fine. Then my blood work would be so- so and I would be ok, things were like that until last November 9th(I even remember the day)when I got the blood work and the body to do the same thing so the Rhumey put me on Placqunil. Started it with no problems, all was fine.


    I got sick when the kids went back to school this year, they brought it home to me but this had happened before, my resistance was low. Well what a cold it turned out to be horrible. I haven't been that sick in a long time with a cold. It left, ok I'm getting better then about a week after I started to feel better-wack! I spike a temp of 102.3, I'm in a pool of sweat-very, very, sore. I fell asleep, woke up a few hours later-not so bad. Then the fatigue set in, the pain in my knees, wrists, and feet. Swollen like nobodies business-just a mess.
    I had to go for blood work and it showed a very high SED rate and protein in my urine. A few other things were out of sorts but those are the two I remember. So in I went for my visit to find out that I was having my first flare. Oh, so that is what that's like! Yuck!
    I was put on Prednizone(wow, what a med) I had to call in a week if nothing was different. Well I was not alright so the Rhumey has kept me on the Prednizone and slowed the taper a bit.
    I have to go back this week for more blood work and if I still have the two biggies then onto Cellcept for me. I'm still reading and learning all I can about this all, it's been alot to take at one time.

    It just seems like it all happened so fast and I don't know what hit me? One minute I was ok then the next I'm down, that's it. Pain in my hands, feet, knees(that was the worst) and joints. Fatigue, bad. Just not me at all, even my mind was off really bad. Swollen, even now I'm still swollen pretty bad..

    Did it happen for anyone else like that? Any stories would be great..If you feel up to it-I'm listening..

    Aggie

  2. #2
    Join Date
    Sep 2007
    Location
    Brunswick, GA
    Posts
    3
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Aggie,

    I know what you're talking about - it happened like that for me too. Check out my post in new members forum from Oct. 8 (I think).

    I had had various symptoms but never connected it with lupus because my PCP didn't. Not until my 4th attack of pericarditis in 4 months, and a heart cath. did they even do a test. And it was I who asked why they hadn't done any blood work. So after the heart cath the cardiologist ordered labs done and found the positive ANA. and high sed rate, among other things. She thought lupus right away and sent me to a rheumy. I've been on prednisone 20 mg since April - my rheumy started me tapering first of Sept. - now I'm down to 10 mg a day. I felt fine in between peri. attacks , which were each reated with mega-pred. and just knew the doc was wrong - no way did I have lupus! Until 3 months later when I apparently had my first (?) flare. All of a sudden I couldn't even get out of bed - my body felt like it was made of cement - I've never felt so fatigued and weak in my life. Short of breath, low grade fever, nauseous, dizzy, and achey - for nearly 3 weeks. Now I'm slowly getting past that. I think it may have had something to do with tapering the pred. I have an appointment with my rheumy next week for bllod work again.

    After researching lupus on the web, I realise that I've had several of the other symptoms over the last few years , but never made the connection with lupus. I often have a positive ANA, because I had hepatitis C, have Sjogrens and lichen planus - all auto-immune deseases - so I guess I shouldn't be surprised. The HCV is in remission now for 6 years, thank goodness.

    I was getting really worried about my mind too - was afraid I was getting senile - then found out it's the lupus and even has a name - "brain fog!"

    I sure hope you're starting to feel a little better - I guess it will never be "life as we knew it" again, but we get a choice as to how well we live with it. For me, I count the good days I'm beginning to have, and thank God that my bad days aren't any worse than they are. Haven't you often wished you had a really good excuse just to lie in bed all day and read, (or sleep or watch TV without feeling guilty, or an excuse NOT to clean or make dinner, without appearing lazy?. Well, now we have one!!

    I'd love to keep in touch since we're both newbies - we all need support.

    Hang in there....

    Karen
    If God brings you to it, he will get you through it.

  3. #3
    Join Date
    Sep 2007
    Location
    California
    Posts
    684
    Thanks
    0
    Thanked 14 Times in 13 Posts

    Default

    Welcome Aggie,

    This board has so much information and the communication is awesome. I am learning something new every day.

    I remember my first flare shortly after being diagnosed with Lupus. At the time, I did not know I fell into the photosensitive group (dle) along with regular sle.

    I had been in the sun a very short time the day prior; and it hit me. The following day, I remember being in bed; and then crawling on hands and knees back and forth from my bed to bathroom. Didn't have energy, slept and every movement was excrutiatingly painful to and from the bathroom. After being on prednisone for 5 days, on the 5th day I was able to gingerly walk slowly to and from bed to the bathroom. I never thought of the sun as an enemy; it changed my entire outlook.

    If I am coming down with a cold or flu, I now call my Dr. on day 2 and request a Z-pack called into the pharmacy. Otherwise I am like you, down for some time, and then it always turns into bronchitis, and then pneumonia. Our bodies don't have the defense to fight off the normal cold, flu, sun, flourescent lights, etc.

    Remember you are your own advocate. Learn as much as you possibly can and always ask questions. You mentioned you are on Plaquenil, are you having your eyes examined by an opthomologist every 6 mos? If not, you should check into it. A lot of insurances will cover the exam as a result of the Lupus; you may be responsible for your copay. It would definately be worth checking into.

    Keep in touch and welcome to the group.

    Take care,

    Faith

  4. #4
    Join Date
    Nov 2006
    Location
    Northeastern PA
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thank you so much for the welcome-- I'm so glad that there are places like this that we can come to..It's nice to know your not alone.

    I know way back when, when I was only 24 and the Chronic Pain started I felt very alone..None of my friends knew anything that I was going through. I lost a few along the way, but I kept the good and real ones and I still have them to this day..Talking has always helped me.

    For now it's a wait game again..I had a bad set of tests-real high SED rate and a high amount of protein in my urine . I had to take the prednizone for two weeks then go and give blood and urine again. I did that on Friday so hopefully they call tomorrow and say...Your tests are fine, your fine..(I"m a positive thinker!) or I have to start more serious meds-that sound so yucky to be honest with you..
    Good news is that the swelling has gone away alot. When she stablized the prednizone I got better.

    Now today I'm tired and my face is so red-it feels like someone told me a dirty joke and I'm blushing..

    Aggie

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •