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mnjodette
12-21-2007, 03:04 PM
Yet another new symptom for me...must be my month for them. :) My creatinine levels have been creeping up a little every month. High enough now that my rheumy is checking for protein in my urine. I've been reading on the Internet, and one source says that even small elevations of creatinine are likely a sign of inflammation in the kidneys. I know nothing for sure yet, of course. My doc says sometimes certain meds can cause these symptoms. But, this is scaring the *$&# out of me. I've always said "Well, at least I don't have kidney problems!" So, if the test comes back positive for protein, what do I have in store for me? Unfortunately, the test was done yesterday, my doc is off now until after the holiday, so I'm in 'wait and see' mode!

Pretti in Pink
12-22-2007, 06:06 PM
Well, first off try not to ruin your holidays by worrying about what you can not change. As for the increased creatnine level, it is not always as sever as kidney disease, some time it is just inflammation. One time my MIL's creatnine level was over 2.0, due to her diabetes, and it landed her a good three-four days in the hospital but with antibiotics, it turned around. As you know there are many of us that have kidney problems and some that have shared stories of remission. Remember, kidney problems can be cured and is not an indicator that all is going downhill. Keep your head up try not to worry and enjoy the holidays.

mnjodette
12-22-2007, 09:02 PM
Thanks, Pretti. You're right, of course - no point worrying about something I can't control. I'm just going to keep movin' on like I have been, and I'll deal with whatever gets tossed my way. Hope you have a great holiday.

SonyaLA
12-26-2007, 09:01 PM
My creatnine levels go up and down. When they get real high, my doc will order the protein tests, usually about twice a year. She has told me that an infection could also cause the levels to be off. I've been lucky that increasing the preds has dropped the levels back down each time.

With a diligent doctor keeping an eye on your levels, and adjusting your meds, you should be just fine.

Sonya

sick n tired
12-26-2007, 11:40 PM
Oh mnjodette,

I am sending a thousand cyber hugs to you to try to get your mind off of this until you find out something definitive.


Sending good thoughts to you,

Karen

mnjodette
12-27-2007, 05:31 PM
Well, no word from the doc! I'm guessing no news is good news - if there was anything wrong, I'm pretty sure her office would've called. I see her again in about a month, and I'm sure she'll run the tests again.

Thanks for the responses...it's always so good to hear from those who've been there.

Missy
12-29-2007, 01:00 PM
Hi Jody -

I think if it's on your mind, it is worth calling the doc for some feedback on that test. It's SO GOOD that you are knowledgeable about your disease and keping an eye on those ups and downs. What was your Creatinine? IT can fluctuate a little and still be in the normal range. For example, mine can be anywhere from .9-1.1 and the nephrologist says that is ok. If it gets too high, your doc should refer you to a nephrologist, if you aren't alrady seeing one.

Also, I know from experience that "no news is NOT good news" from docs. I have called when I didn't hear back and actually had fallen through the cracks. I might be paranoid, but I don't trust that with all their patients they really examine everything carefully every time for every patient, and since I've had bad problems in the past that were missed by a doctor, I won't let it happen again on my watch.

I don't know if this helps or not, but just my 2 cents!

Wishing you the best,

mnjodette
12-30-2007, 03:29 AM
Thanks, Missy. That's good advice. My creatinine has been 1.1, then 1.2, then 1.3...you get the picture. I believe it was 1.4 last time. I will call on Monday, just for the reassurance. Things sure could fall through the cracks during the holidays. I like my rheumatologist, and she really tries to be responsive. But, she's the mother of 3 young kids and really only has office hours Tuesdays and Thursdays. She's accessible by her staff (if needed) and she has other docs in the office to cover. Still....I will call her. Thanks again.

Jody

Missy
12-31-2007, 08:43 AM
Jody -

Glad to hear you are calling. 1.4 is something to notice. How great that you are keeping track of it. We all have to be our own healthcare advocates.

Wishing you the best,

mnjodette
12-31-2007, 10:04 AM
My doc is good about providing me whatever I ask for. Last time there, I asked for a history of my labs so I could see a trend. She had her staff print it for me on the spot. Very nice!

mnjodette
12-31-2007, 11:01 AM
Just talked to the doctor's office - no protein in my urine, so in this case 'no news was good news'! I'm sure we'll have to watch the creatinine levels, but there might be other reasons those would be elevated. Nice New Year's present for me!

Jody

Saysusie
01-02-2008, 08:52 AM
Yes Indeed!!! I am so glad that there was no protein leak!! Glad that you were able to start your new year out with a smile and some good news!!!

Peace and Blessings
Saysusie

joakris
01-02-2008, 09:44 AM
YEAHHH good for you!


mnjodette what rhume do you go to? I go to one in edina i wouldnt mind seeing a female instead of a male.

Missy
01-02-2008, 07:52 PM
Jody - that's great! Congrats!

I do the same thing - have the lab send a copy of my tests to me and I keep my own spreadsheet. I know, it sounds a little "over-organized", but I really have noticed trends and spotted things that were inportant. Sometimes, with so many docs, I get nervous that one thinks another is following something, and then something could get missed!

mnjodette
01-03-2008, 01:43 AM
Thanks for all the well wishes! Joakris, I'm actually in Duluth so that's probably a bit far to travel for a rheumatologist when there are so many where you are. I just got an email about a luncheon at the Lupus Foundation of Minnesota offices in Bloomington. Here's the link: http://www.lupusmn.org/Events/Events.htm

I bet you'd connect with a lot of people there, and if you're not happy with your doctor, I'm sure you'd be able to get some recommendations from others.

Good luck!