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Thread: Labs Monitoring

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    Default Labs Monitoring

    Since drug induced remission in October 2008, I feel i have never been monitired adequately. To date 3 different doctors have overseen my treatment and each one has done 3 monthly labs. I recently consulted with a Nephrologist and asked his opinion on how often my kidney function should be monitored and he says as long as I am stable 6 monthly should be fine.

    I have renal involvement (stage 3 CKD) and so I am worried about a 'silent' flare and feel that I should be monitored more frequently. I do what I can to monitor rmyself by checking my BP frequentlty, urine dipsticks for protein etc and check for fluid retention. But is this enough? I did mention to one doctor that WG patients in the USA are monitored monthly and her response to that "because the doctors are afraid of being sued"!!! Just thought I'd mention that so you get an idea of what I have to deal with.

    I haven't had labs done since end November last year as my Rheumy now says 4 monthly labs is adequate. I am also on Cellcept 750mmgs twice daily and that alone should call for more frequent monitoring.

    Any suggestions on how to approach this subject with the doctors without coming across as if I am telling them how to do their job??

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    I would say you need labs more than once every 4 months for sure. I am sure my doc would not let you go without at least once a month

    If it were me I would be totally up front and explain it your doc. If your doc does not comply then I think I would start to look for a new one.
    Phil Berggren, dx 2003

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    At the beginning I was on fortnightly labs and then at 6 months went to monthly labs and now I am on every 3 months. I guess every Country has different ideas.
    I think every 3 months would be okay especially since you are also doing your own tests and know to go to your doctor straight away for labs to be done......if your own tests were elevated or changed in any way.
    Another home test I would add is monitoring your blood sugar levels, if you are on pred.
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    Quote Originally Posted by Rose View Post
    Since drug induced remission in October 2008, I feel i have never been monitired adequately. To date 3 different doctors have overseen my treatment and each one has done 3 monthly labs. I recently consulted with a Nephrologist and asked his opinion on how often my kidney function should be monitored and he says as long as I am stable 6 monthly should be fine.

    I have renal involvement (stage 3 CKD) and so I am worried about a 'silent' flare and feel that I should be monitored more frequently. I do what I can to monitor rmyself by checking my BP frequentlty, urine dipsticks for protein etc and check for fluid retention. But is this enough? I did mention to one doctor that WG patients in the USA are monitored monthly and her response to that "because the doctors are afraid of being sued"!!! Just thought I'd mention that so you get an idea of what I have to deal with.

    I haven't had labs done since end November last year as my Rheumy now says 4 monthly labs is adequate. I am also on Cellcept 750mmgs twice daily and that alone should call for more frequent monitoring.

    Any suggestions on how to approach this subject with the doctors without coming across as if I am telling them how to do their job??
    In my post yesterday under another thread I noted Dr. Specks said initially I could cut back to every six weeks but then after more discussion he told me why every month would be safer. Once you lose your kidneys it is too late to do much about it. He also has me on weekly dipstick checks for blood but that can be erroneous since you could get blood from a bladder or prostrate problem and kidneys may be fine. Also it doesn't pick up problems with kidneys that result in protein in your urine. He said you could get by with a monthly urine test and check blood for creatnine but then you might as well do the whole Complete blood panel.

    How to get better service is a universal problem that every one encounters some time. I would start by expressing your desire to have monthly checks and ask what it would take to get that done. One way I can do it is I see four regular doctors for different things--internist-endocrinologist-treating rheumatologist- and one for GPA study at Mayo. They are seen every 3 or 4 months so I can stagger my appointments so it works out to close to monthly lab work. Others ( urology and nephrology) are seen annually or as needed. I also have orders that i can get labs done anytime I think I am having a flare or problem that needs to be checked out.

    Can you get more than one doctor to order labs for you and schedule them with some time between appointments.
    Last edited by drz; 03-22-2012 at 11:49 AM.

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    Rose - I don't have kidney involvement, so I can't address that issue. But I am also on 750mg cellcept twice daily. Because of the cellcept, I am monitored monthly for low white count. The labs included a CBC, and creatinine. Again, I'm no expert on kidneys, but the creatinine levels would give you an early warning, correct?

    I would think at very least you should be having the same type of monthly monitoring.

    Sometimes when I want to bring something up to a doctor, without sounding like a know-it-all, I say "I've read that .........", or "Some of the people in my support group........". If your doc still denies that you need the bloodwork, then I say, you should probably go ahead and tell him/her that you'd rather have it done, so you have peace of mind. I'm not one to keep my mouth shut, and do what I'm told without question. Speak up I say.
    ~ Chris ~
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    Quote Originally Posted by mishb View Post
    At the beginning I was on fortnightly labs and then at 6 months went to monthly labs and now I am on every 3 months. I guess every Country has different ideas.
    I think every 3 months would be okay especially since you are also doing your own tests and know to go to your doctor straight away for labs to be done......if your own tests were elevated or changed in any way.
    Another home test I would add is monitoring your blood sugar levels, if you are on pred.
    I have always wanted to know what a fortnight is.
    lightning crashes
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    I have a appt. to see my reumy in a few weeks and I called him and asked him if I could get a urine test done to check my kidneys. I've been having alot of pain on my left side and towards my back and he said it wasn't necessary to have any urine tests and he also never checks my anca levels.
    I had to have a colonoscopy and a endoscopy done a couple of weeks ago and every thing came but o.k. and I told that dr. I was having pain on my left side also...so whats he do..order an echo of my liver(on the right side) so I asked the lady if she could just look on the other side real quick,she didn't want to but did any way. Yesterday they called me from the hospital and the radiologist saw something on my kidneys so tomorrow I have to go get an echo of them. DRS....you gotta love em!!!! I am trying to find a kidney dr. in the area that know something about Wg.....the search is on.

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    Debts, I am so sorry you had to go through this and irritated that your rheumy was so unconcerned about your left sided kidney pain. Do you have other choices for a rheumy? Do you have the ability to get to a wegs specialist? I am really proud of you for pushing the tech to take a.look. I can't tell you how many times I have had to guide and force my own care. Good job at keeping yourself alive.

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    Rose, as others suggest, the real issue is with the kidneys: A silent flare could be ruinous within the four month gap. I also have a renal panel monthly, which is the reason that my last flare was caught early, and the reason I still have my kidneys, such as they are. Yes, you can and should check for blood in the urine. Particularly note any rusty coloring. As drz says, there can be other explanations, bu it is a reason to race off for more definitive testing. Now, on a more personally philosophical point, it is your body we are talking about here. Ask the doctor what he would do if his own kidneys were in danger. Could he wait four months?

    Al

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    Quote Originally Posted by Debra C View Post
    I have a appt. to see my reumy in a few weeks and I called him and asked him if I could get a urine test done to check my kidneys. I've been having alot of pain on my left side and towards my back and he said it wasn't necessary to have any urine tests and he also never checks my anca levels.
    I had to have a colonoscopy and a endoscopy done a couple of weeks ago and every thing came but o.k. and I told that dr. I was having pain on my left side also...so whats he do..order an echo of my liver(on the right side) so I asked the lady if she could just look on the other side real quick,she didn't want to but did any way. Yesterday they called me from the hospital and the radiologist saw something on my kidneys so tomorrow I have to go get an echo of them. DRS....you gotta love em!!!! I am trying to find a kidney dr. in the area that know something about Wg.....the search is on.
    Debra, not all Weggies have kidney involvement, but all Weggies are candidates for kidney involvement, and should have a regular renal panel. These things can sneak up on you in a hurry. You should have have a nephrologist on your team. While the rheumy takes the lead most often in WG cases, it is worth noting that not all rheumies are good with vasculitis. In my experience, though, most nephros know enough about WG to take it seriously, especially if the diagnosis has already been made. By the way, there are many reasons for back pain, but it is, in fact, one sign of kidney distress. And if the ultrasound has any "shiny" areas, have a serious and immediate talk with the nephro. Be sure he knows about the WG.

    For most people, it is not necessary to check ANCA titers regularly, at least past the initial diagnosis. However, it is a useful test to monitor how well CTX or RTX is doing its job. Also, for a few people, ANCA corresponds quite directly to disease activity.

    Al

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