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Thread: So, it's confession time...

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  1. #1
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    Default So, it's confession time...

    So, here's my question... In the beginning July, I was taken off of all of my bp meds that were supposed to help keep the protein in my blood, and my diuretics, and my potassium due to LOW blood pressure...

    I actually stopped taking everything except for my cholesterol meds. No prednisone, no cellcept, nothing.

    On the 22nd of this month I went to the dr. and had my blood work done, and the doctor said that everything looked really good...

    I didn't tell her I stopped all my meds....

    So my question is this: If I stopped all of my meds, and my blood work looks good, (IMPROVING even) does that mean I DON'T have Lupus?

    BTW, stopping my meds didn't stop a most of my symptoms, the way I thought it would...

    I even stopped taking my thyroid pill and she said THAT looked good! What does this mean???
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    I don't really know for sure, but I do know that alot of these medications stay in your system for a few months. Maybe your body hasn't had a chance to respond yet to the lack of meds because you still have some floating around your body? Just a thought...

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    So, then should I wait until my next appointment (the end of October) and see if anything changes? Or should I not risk it?
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default IT IS REALLY DANGEROUS TO ABRUPTLY STOP PREDNISONE

    If you've been on it for any length of time. The reason is that prednisone is a synthetic form of a hormone our bodies produce naturally in the adrenal system. When you start taking prednisone, your adrenal system no longer has to produce these hormones, so your body gradually stops making them for itself. At that point your body is completely dependent on the steroids you are taking. Without a specific blood test called an ACTH it is impossible to know whether your body is making these hormones or not. It can take up to a year for your own adrenal system to start functioning normally after taking prednisone. Which is why all the drug literature tells you that you may need to start taking steroids - even if you've been off them - if you have an illness, surgery, etc.

    if you stop taking prednisone abruptly, you may not notice any dramatic symptoms. BUT, AND THIS IS A BIG BUT, even a minor illness like stomach flu, stress, even a severe fright like a near car accident can send you into sudden adrenal failure which if not treated may kill you or permanently damage your organs, Adrenal failure can come on suddenly with little warning, and an ER doc may not be able to diagnose it accurately without knowing your medical history.

    I understand the frustration with diagnosis and meds. But please be upfront with your doctor about everything. You would be very upset with any doctor who kept information from you, and I suspect your doctor might feel the same way.

    Not trying to scare you here, but please be careful.

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    I agree with MaryCain that you should be up front with your doctor about stopping your medications, but I don't think that means you have to start taking them again. Your doctor is probably going to tell you to go back on them, but it is your body and your right if you feel strongly about it.

    I also agree that it may take time for your body to realize that you have stopped taking them and your next appointment may tell the tale better. Listen to the cues your body is giving you. Do you feel like you don't have the disease anymore, or that maybe you never had it to begin with? I doubt it. Especially if you are still experiencing physical symptoms. Make sure you are keeping a daily journal of symptoms so you can keep a clear picture in your head for you and your doctor to reference over the next couple of months.

    I do think it is very important that you keep your doctor abreast of the true situation, but also of your wish to be "chemical free" for a while, under her supervision. If anything, and I mean ANYTHING happens, go straight to her and work from there.

    Good luck, and keep us posted. I am curious to know how it goes.

    Stay safe and take care of you.

    - peach

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    Okay... I can see that... But why would my blood work be BETTER this month than it was last month? I could see if it was the same... But BETTER?

    Yeah, I'm wondering if maybe I was misdiagnosed? See one of the things is I didn't have that many of the critera when I was dx'd I had kidney involvement, +ANA, and I had pleuresy... And the Prednisone never made me feel better... I don't know, I think the reason that i stopped was more because I kept being told that my symptoms were medication related.... But, going off the meds didn't make my symptoms better, or worse... The only thing it made better was my stomach, because i have always had a sensitive stomach... But, my blood work improved since the end of June... I'm so confused!!! :cry: :cry: :cry:
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default DID YOU HAVE A KIDNEY BIOPSY WHEN YOU WERE DIAGNOSED?

    Because if you did, it's very reliable for the diagnosis of lupus nephritis, so you were probably diagnosed correctly.

    Normally doctors don't diagnose lupus unless you have 4 of the 11 diagnostic criteria, unless you have a kidney biopsy or skin biopsy specific for lupus markers. Three of the 11 strongly suggests lupus but isn't generally enough for a definite diagnosis - because lupus can look like so many other diseases. Even a positive ANA isn't specific for lupus because it occurs in almost all autoimmune diseases and even in some people with no disease at all. Immediate relatives of lupus patients often have high ANA levels also, even when they have no other symptoms. Generally, the higher the ANA titer, the greater the likelihood of lupus, but some rheumatologists don't consider ANA titers significant until they hit the four digit level. Most lupus patients will also test positive for other antibodies as well.

    If your doctor is not a rheumatologist, you should probably see one to confirm your diagnosis. If you have doubts about the diagnosis, you should get copies of your medical records and review them, then schedule an appointment with your doc specifically to discuss this issue. Tell the receptionist when you schedule the appointment that you have something important to discuss and ask her to allot extra time for you.

    You have to remember that lupus is characterized by periods of flares and remissions, so it's possible your blood work is better because you are going into a remission unrelated to your meds. I personally have found that my blood work seldom correlates with how I actually feel. Sometimes my bloodwork is okay even when I feel lousy, or my bloodwork is really off and I feel relatively okay. So you just can't tell by bloodwork alone.

    Lupus is called the great imitator because it looks like so many other things, so it's always possible that you have some other auto-immune disease rather than lupus. that's why it's really important to find a doctor who specializes in autoimmune disorders. It's also important to ask questions and demand explanations. Don't let your doctor intimidate you into minimizing your illness or thinking you're some kind of hypochondriac. They work for you - you don't work for them.

    Okay, it's Sunday, so I guess that's my sermon for the day. Hang tough, girl, you will get through this.

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    Hi Solesinger,

    I agree with what Marycaine had to say. I will share with you, that I did the same thing early last summer; because I was feeling GREAT. So I slowly tapered off.

    I did great for a couple of months, but as Marycain mentioned, these drugs stay in your body for a while, especially prednisone; and that is precisely why you still feel great right away. I do want to caution you friend, changing your dosage and frequency is dangerous. I know, I've been there. Once you're off and then you wait awhile to tell your m.d.,
    and when symptoms start coming back...they don't come back like before, they come back with a vengence.

    I wish with all my heart that we didn't have to take so many meds; I'm a chemical free "dreamer", and having been too close to the edge; has made me realize that lupus and meds are not to messed with, unless your working with your doctor. In my case, when I went off of the prednisone and Cellcept; now I'm having to take double the dose for it to do what it did before.

    I don't want to rain on your parade, solesinger. But this is not something to mess with if you don't have the pharmaceutical background to understand how all this STUFF works. I wish now that I had never gone off of it; but I suppose it's nature. We feel better so we think, we don't need this. As my ER physician said; "it's the drugs that were helping your body, that's what made you feel better". PREDNISONE IS NOTHING TO MESS AROUND WITH. While it is a life-saving drug, all the doctors, and phamacists will tell you, NEVER SUDDENLY STOP THIS MEDICATION.
    I also take Cellcept 3 grams a day, my doctor has said the same thing to me of that med. Cellcept is an oral chemotherapy med - originally used for transplant patients. It too takes time to build up in your system.

    So, after my ER visit and several thousand dollars later I learned a very important lesson. I agree with earlier post, you need to be monitored by a rheumatologist; and make sure they do all the tests necessary to get the correct diagnosis. These meds are so complicated in their structure and how they work; phamacists have to constantly research them!

    I didn't want to rain on the parade, but I felt a responsibility to share with you my experience. I did exactly what you did...and I hope someone else doesn't have to go through that. It has now taken me twice as long to get to where I was before.

    I hope things continue to go well for you!!

    Much love,
    Browneyedgirl

    p.s. I heard your music, what a beautiful voice you have!! Never stop singing!! You have a god-given talent and I hope you continue to sing, and sing, and sing some more !! Love to you - Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    Ok here's the deal, yes I had a kidney biopsy, I DO see a rheumatologist, but like every 4 months... I see my nephrologist every month. I didn't go off the meds because I feel better... I went off them because I keep being told that the reason I feel so crappy is because of the meds and she has told me that my blood work looks great for like the past 6 months and that I am "basically in remission". They don't believe that my pain is from Lupus, though I never had any pain before I got sick, and they act like I shouldn't have the symptoms that I am having... So I guess I wanted to test it and see if anything would change... I still feel as crappy as I did before, but no worse, and my blood work still looks good... I guess it just doesn't seem logical to me... Okay, so since this stuff isn't stuff to mess around with should I go straight back to the doses I was on before I stopped? Do you think?

    I don't know, I guess I just really wish that I was normal again...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default SOLESINGER, LUPUS IS LIKE A NEVERENDING CATCH-22 SITUATION

    Once of the real catch-22s is sometimes lupus meds, especially prednisone, can trigger a pre-existing or latent condition that wasn't symptomatic before. The thing that comes to mind is fibromyalgia - many lupus patients who never had a problem with it before find that taking prednisone has triggered the onset of fibro, and the more steroids you take, the worse the fibro makes you feel. Unfortunately, once you have developed fibro, just stopping prednisone doesn't make it go away.

    Fibro symptoms can include severe fatigue, generalized pain, muscle spasms, trigger points which are extremely painful when touched, headaches , GI upset, dizziness, tingling feelings in hands, etc. If any of this sounds painfully familiar, you may have fibro triggered by the prednisone you took for your lupus. Unfortunately, there are no lab tests for fibromyalgia, but you can ask your doctor to do a trigger point exam.

    If you don't want to go back on prednisone, ask your doctor to do a 24 hout acth stimulation test to measure to measure your adrenal function. If it's in a safe range, you may not need the prednisone.

    Tapering prednisone needs to be done under a doctor's supervision. if you do start taking it again and decide to stop, you have to wean yourself off it very gradually by reducing the dose a little bit at a time, but no more than a milligram every 5 days or so.

    It's always a good idea to have a medic-alert id or card with your medical and drug info on it, especially if you're taking prednisone, chemo or bloodthinners, so if something does happen, an er doc knows what he's dealing with.

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