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Thread: So Incredibly frustrated

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    Default So Incredibly frustrated

    Hello all,
    I am new to this forum and equally as confused as many others. Over the past 2 months I have visited the Emergency Room 4 times. Sx have ranged from severe abdominal pain- which we thought was IBS to severe headache/nosebleed, high B/P (dx as a migraine) and flank pain ( dx as a UTI- given Cipro). I was given pain meds in each of these situations and released. One Saturday about 3 weeks ago I dipped my own urine and performed a specific gravity because it occurred to me that I had no UTI sx and I rarely voided during the day, but I'd get up at least 4-6 times every night to go. With the blood,protein and low concentration I immediately suspected glomerulonephritis and it terrified me. I only have 1 kidney. I've had a nephrology consult and all my labs have come back to support SLE. I don't see a rhematologist until Mar.26. I will see the nephrologist again on the 15th. I have been the squeaky wheel trying to get an earlier appt. but to no avail so far. My issue is that I am in constant pain and fatigue. Some days are worse than others. But most days are pretty bad lately. I am concerned about my worsening kidney function. And so incredibly frustrated that when I call to find out if anyone has cancelled an appt I am told to see my primary or go to the ER. My primary has no idea what to do, which is why she ordered the consult and the ER has only given me the pain meds. This does nothing for the inflammation or the immunity issues. I realize that it would take a moment before any of the meds would work effectifvely but I am so frustrated that the answer has been essentially to just "wait and suffer" until your appointment.

    Today, I am in pain and am having difficulty assessing whether i should make a visit to th ER again. I realize that i have a difficult time advocating for myself when I am in this position. I can't always determine if this is just a "bad" day or if things are getting worse.

    thanks for understanding.

    Lori

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    You say that you have been diagnosed with Lupus or your test results are indicative of Lupus? If you have been diagnosed, the next time you go to the ER tell them that you are a Lupus patient and you are currently in a Lupus flare-up and that you will not be able to see your rheumatologist until the end of the month. You feel that your kidneys are compromised and your inflammation is being unchecked. Ask if you can get a Prednisone pack along with the pain killers to help with control your flare-up until you can see your rheumatologist.
    In most cases, when Lupus is diagnosed, doctors will prescribe Plaquenil, Prednisone and pain medication. This combination of medications can, for many, start to relieve symptoms and decrease inflammation. How well they work depends greatly upon how advanced the flare up is and how advanced internal organ damage is.
    You will find, here in these forums, a lot of information about Plaquenil and Prednisone. Read about them and/or do research on your own to help you decide if you want to ask for the medications and fight for the right to have them prescribed immediately. It is important that we all learn to stand up for ourselves with doctors and that we become our own advocates. I hope that you are able to do that for yourself.
    Please let us know what you decide and how you are doing.

    Peace and Blessings
    Namaste
    Look For The Good and Praise It!

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    mslorilmt (04-14-2010)

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    Welcome to WHL!

    FWIW, I agree wholeheartedly with Saysusie! It sounds like you're in misery and getting nowhere fast. It's hard to advocate for yourself when you're feeling terrible, but I think Saysusie hit the nail on the head with her advivce. Let us know how you're doing.

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    mslorilmt (04-14-2010)

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    Thank you ladies for responding to my post. I am so sorry for the delay. I was admitted to the hospital 2 days later for 10 days. I couldn't breathe well and was in an immense amount of pain. Susie, At the time I hadn't seen the doctor to get the official diagnosis of SLE because my next docotor's appt was a little over a week away. I had seen all my lab results though and it was pretty clear to me. Currently I am on plaquenil, cellcept 3000 mg daily, and tapered to 40mg day of prednisone on Friday. Was on 50mg for the previous 2 weeks. Left the hospital on 60mg. It's been horrible not knowing what to expect. I have read a lot but even still it's difficult because this is all so new. How do I know what is normal for me when nothing is normal right now? Like today I woke up with a new fluid filled lesion near my knee and got really scared. We tapered the prednisone on Friday and I had a horrible couple of days that I originally attributed to steroid withdrawal at the time. I am now concerned that the taper is creating flare symptoms. Messaged my doctor and am waiting to hear back. Do the lesions just come like that? Or are they indicative of a flare? What does it mean if you're already in a flare? It's scary to feel like you're getting better and to possibly have the little setbacks. I try to focus on all the positives and the blessings that I've received though. Otherwise I'd go crazier than the prednisone and lupus has already made me! Thank you all for your help! I really appreciate this forum.

    Lori

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    Many have found that, when tapering Prednisone, their symptoms re-appear or worsen. No one can actually say if the Prednisone withdrawal is causing a flare or if the Prednisone use is preventing a flare. It is really kind of a moot point. You may need to stay on a higher dose of Prednisone until the symptoms are under control for a period of time, and then start to ween down. Even at this, many have found that they had to remain on a maintenance dose of Prednisone for a lengthy period of time in order to keep the symptoms under control.
    Often, doctors will prescribe immunosuppressant drugs with the Prednisone so that the maintenance dose can remain low and I see that your doctor has done that by putting you on Cellcept.
    You are apparently still in a pretty active flare and while your Lupus is active, it is not uncommon for other symptoms to appear (such as lesions and rashes). The severity of the lesions are usually indicative of the activity of your lupus. I know that it is difficult to deal with the symptoms that you already have and then have to realize that others may appear. But this is not uncommon when the disease is active. Once the medication begins to control the disease, you will find that some of these symptoms will resolve and/or lessen.
    Do continue to try to focus on the positive, I know it is difficult when you are flaring. But we are here to help you through this and, hopefully, your symptoms will start to resolve soon.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    What wonderful support. What a difference this could have been for me 25 years ago. My rheumi at that time saw only test results never me as a person. He ordered tests, wrote scripts and said see you next time. I was told not to have children and my time may be up in five years. Needless to say I no longer go to him and learned a lot on my own. Well I'm still here and have two kids. It wasn't an easy road but certainly a wild trip. Hang in there, it takes time for things to calm down and adjust the meds for you at a maintenance level

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    mslorilmt - I hate to say it but I was glad to read that you had finally got admitted to the hospital for care. The lesions you need to be careful with because you're on two powerful immunosuppressants. There is nothing wrong with you going to the doctor early or the ER if you are concerned about your symptoms and don't let anyone make you feel bad for being concerned. Until you learn your bodies warning signs in flares, you cannot be realistically expected to feel comfortable. Also, the ER is there ANYTIME you feel your life is in danger. Steriods can increase panic attacks. You kind of sound like the kind of person who needs to be highly informed of your condition. Are you getting copies of your blood labs and medical records? Do you understand what they mean?
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

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