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Thread: New with Lupus and i'm already confused

  1. #1
    Join Date
    Sep 2008
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    Default New with Lupus and i'm already confused

    Hi all I am new to this board and have found some comfort in reading all of your experiences.Bieng new to all this I am a little confused and overwhelmed. A little history about meI am 29 now and all this started at 15 when I was diagnosed with hypothyroidism, was sick off and on through the years.I got married in 99 and started trying to have babies.In between having my 3 children I had multiple miscarriages which resulted finally in 2004 my ob test me for various things and she diagnosed me with Antiphospholipid syndrome. Didn't hear anything about possible Lupus then though.Just this year I switched primary Dr's and with my history with the other 2 conditions he did a initial work up and tested me for Everything.My ANA was neg but my anti-ds DNA was positive (that was confusing,ANA neg??). With all that combined plus my current symptoms of fatigue, achiness and frequent infections he diagnosed me with SLE this May and sent me to a Rume. I was put on Plaquinil 6 weeks ago untill Last week when it was making me so nausous I cut it in half and then developed a upper respitory infection.He took me off my Plaqunil while I am sick and prescribed me Septra which leads me to my questions.My RX papers say Plaquinil is a antimalarial that helps by supressing the immune system.When I asked my Rume He told me it wasn't immune supressing but took me off while iam sick anyways?? My next confusion is He rx'ed me septra which every website I have seen says not to or to be careful taking sulfates because they can CAUSE Lupus or bring on a flare in exsisting Lupus??? Dr says it's fine,maybe for short term??? Also He tells me according to stable bloodwork #'s I am in remission and yet I have so many symptoms still. It scares me to think what will happen when it decides to be active.EEKK So much info,so confusing!!!

    Thanks all what a blessing to be able to talk to others that understand!


  2. #2
    Join Date
    Feb 2008
    Nova Scotia, Canada
    Thanked 1 Time in 1 Post


    Hi Amanda

    I wish I had had a chance to talk to you before you came off the plaquenil. When I first started taking plauqenil, my family doctor warned me of the side affects.

    She takes it too.

    She told me to take both pills at the same time, just before bed with a small tub of yogart.

    It worked like a charm. It didn't upset my tummy and I slept through the dizzy spells it cause. Woke up feeling ready to face the day instead of running for the bathroom.

    If you are really unhappy on the new drugs then ask your doctor if you can go back on the plaquinel.

    I can not take sulf based medications at all. I have a sever reaction to them.

    Welcome to the board, I'm sure some other's will be along soon who can answer some of your questions
    Oh look ... a cookie

  3. #3
    Join Date
    May 2007
    Thanked 169 Times in 95 Posts


    Hi Amanda...

    How are you this lovely Sunday?

    Regarding your questions....

    In laymans terms...Plaquenil does cause stomachaches, but it will subside. Some times the value, in the long run health care out weighs the side effects. Times we have to let the drug run its course till our bodies adapt to the substance.

    Also we should never change our doses unless advise. Though easier said then done. Times I don't follow my own advice on that either.

    Cutting the dose in half isn't what caused the infection or allowed the infection to take hold. Plaquenil is used to control, reduce the rashes and joint pain, though not a pain reliever class of drugs, involved with SLE, DLE and RA.

    Maybe reconsider giving Plaquenil another whirl. I had nausea while on it for weeks. It sudsided. I get bouts of nausea, but when it happens I haven't a clue what ignited it. I wave it off as Lupus as not all symptoms have a clear and cut answers to what, how, and why...It is just Lupus and treat the belly ache as if I didn't have Lupus. Soda crackers, sip warm cola or the un. Like SITC said, eat a bit with the pilll. I believe on the dosing instructions it suggests that also.....

    Indeed you are right..we should avoid sulfate based drugs but not all people need to avoid them though there is a high incidence of skin rash and flares while on them..and it also makes us more sensitive to light...sunlight.

    They say if you have tolerated them in the past you are probably OK. If you have never tried one, it may not be worth the risk, given so many other antibiotic choices. Not all sulfa-containing drugs are implicated in causing side effects in us. So, if you have or feel you are having a reaction, there are other anitbiotics options he could use. Wondering why is he putting you at risk, when you wish not to be? There are also other choices from other classes that would be safe for you to take.

    From my reads he could prescribe one of the following instead...
    You could be treated with the fluoroquinolone class. This class includes ciprofloxacin (Cipro), levofloxacin (Levaquin) and the newer drugs moxifloxacin (Avelox) and gatifloxacin (Tequin).

    He could also use the tetracycline class and the macrolides erythromycin (E-mycin), clarithromycin (Biaxin) and azithromycin (Zithromax).

    I had the anti-DNA ds...(ds - double strand) Mine was a 144.

    This standard dsDNA detects both low- and high-affinity antibodies, providing a very sensitive test for diagnostic purposes... however, it is less predictive for severe nephritis, which is associated with the presence of high-affinity antibodies.

    Antibodies to DNA, either single- or double-stranded, are found primarily in systemic lupus erythematosus, and are important, but not necessary or sufficient for diagnosing that condition. Such antibodies are present in 80% to 90% of SLE cases. They are also present in smaller fractions of patients with other rheumatic disorders, and in chronic active hepatitis, infectious mononucleosis, and biliary cirrhosis.

    This is the range the lab used for my results....
    * Negative: 0-99 units/mL
    * Equivocal: 100-120 units/mL
    * Positive: greater than 120 units/mL

    Remission for everyone is different. It can be based on minimal symptoms, no symptoms, medication free, less medication and etc.

    Regardless if he classifies you as in remission, how do you feel is what is important and that your symptoms are still being treated.

    Stable blood work doesn't mean symptom free, though a good indicator that the disease isn't active OR as active. Know, you still can have symptoms.

    Worry not about what has yet to come, will come, or what may never come at for yourself today, treat your symptoms of today. Eat well and exercise for your health...follow the dos and don't s we must follow...and well, for majority of the "healthy" population in America too, for our tomorrows.

    Read the Sticky' the head of the forums...

    Be well..keep looking for your wellnes..and enjoy this day..
    I have Lupus. So *^#@! what.

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