Renal appt tomorrow

[Jade79]

Going to nephrologist tomorrow to review my last (terrible) 24 hr urinalysis/creatnine clearance and book biopsy.

I have a good grip on the regular lupus portion but once I get into my nephritis, I get confused by all the numbers. What sorts of things do I need to ask/write down?

My big concern is that the CellCept has apparently not worked and though I understand the biopsy will be the thing that answers the most questions, I want to know what we will/can try next. Cytoxan?

TIA

[kaesara]

Hi Jade,
I am sorry I dont have any advice for you on what questions to ask. I wanted you to know that I am thinking of you and I am sure that others will respond with more information on the subject.

Actually I am going to see a Nephrologist soon as my Twenty Four Hour Urine came back with extremely low creatanine clearance. My Rheumie believes that the Nephrologist will schedule me for a Kidney Biopsy as well.

Please keep us posted on how your appt went.

Thinking of You,
Kaesara

[rriffee@yahoo.com]

Hi Jade: Good luck at your dr. appt. You want to ask what your creatinine clearence was and also your B.U.N and Creatinine. These numbers will tell you how affected your kidneys are. Take care Mary Jane

[alobreto]

Hi, Jade! style_emoticons/<#EMO_DIR#>/wink.gif
Just my 2 cents' worth here:
The easiest thing to do when you go to hear lab results is to just ask for a copy of ALL the reports for your own records. That way you don't have to remember test names or anything else, and in the event the results are needed by another doc at another time, then you have them readily available without having to make any special effort.

I'm no expert, but I've heard some people say that Imuran can be helpful.

Hope your appointment goes well and that you'll find an effective treatment that works for you.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[oesa]

Hi Jade - I meant to post lasst night, but ran out of time. I hope your appointment went well - you were given good advice from everyone else about keeping copies of your tests.

I must admit that I don't - my region has an electronic health record for lab tests, so I've gotten lax in that respect. I know they are available in an emergency, so I'm not as careful about it as I once was.

I will give you a bit of a caution about the lab numbers - kidneys are funny and sensitive things, and your lab results can vary depending on a number of things besides disease activity (eg. dehydration or a high protein diets) I used to be plunged into the pit of despair if one month it looked like my recovery was slipping. I'm trying very hard to take the long view now, and as long as the overall trend is in the right direction, to be less concerned with minor fluctuations in results. My e-record graphs my results, and that's helped with my mindset - if you keep your own records, it's not a bad idea to plot your creatinine and protein levels - a tangible sign of improvement did wonders for my morale!

Other than that, it's probably a question of waiting for your biopsy results to discuss next steps. I'm lucky in that I've responded to Imuran so far (with a lot of help from prednisone to kickstart things.) I'm no expert, but my understanding is that Imuran is lower down on the toxicity scale, and generally less effective than CellCept or Cytoxan in severe lupus nephritis cases. But I could be wrong about that - check with your nephrologist to be sure. My nephro agreed to use Imuran as a "first step" and we talked about progressing to CellCept if I failed the Imuran test.

When I was first diagnosed 20 years ago, imuran was cutting edge stuff - before that prednisone was the only option, and I remember clearly my mom and my ped. nephrologist discussing the pros and cons of this new "experimental" treatment.... Good to know that there are more and more options out there!

Let us know how your appointment goes.

Cheers,

Lisa

[Jade79]

Thanks everyone, for all your advice and well wishes.

The appointment went ok. DH has only the basic understanding of lupus (I try to put everything in layman's term) and nephrologist explained the different classes of kidney disease and what creatnine is, etc. Previous to this, DH thought that was the anabolic steroid baseball players use (no honey, that's Creatine style_emoticons/<#EMO_DIR#>/smile.gif !!) so this was helpful.

Doc made me a little spreadsheet that showed my urinalysis results over the last three years. The protein levels of my first 24 hr urinalysis was 0.5 three years ago, leading to my first biopsy where I was diagnosed early Class III. The most recent one (few weeks ago) was 3.36. Quite a change!

My creatnine levels have remained extremely steady so there is hope that perhaps I now have that type of kidney disease that is membraneous... I'm not sure of the name or class but it stays around the outside of the kidney without penetrating, causing a lot of protein spillage but no tainted blood. Or of course, my regular focal disease may have progressed, in which case we are most likely going to go with Cytoxan. CellCept has not seemed to work, but if the disease is not too severe, we may try to double the dose (currently taking 1000 mg a day).

So I'm waiting for them to book the biopsy, hopefully it will happen next week but who knows. THanks for all your help, I'll keep you posted!

[Lily]

(((((((((((((Jade)))))))))))))) Good luck with your biopsy style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

It should give them answers to guide your treatment. Perhaps it will be possible to raise your Cellcept. It's amazing what an increase in dose can do with some of our drugs and you have some leeway there on that drug. I know for me with Imuran it did nothing on lower dose for me, but now I'm on max dose its made a world of difference.

Sending hugs,

love
Lily

[Jade79]

<div class='quotetop'>QUOTE(Lily @ Jun 13 2006, 11:27 PM) Quoted post</div><div class='quotemain'>
(((((((((((((Jade)))))))))))))) Good luck with your biopsy style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

It should give them answers to guide your treatment. Perhaps it will be possible to raise your Cellcept. It's amazing what an increase in dose can do with some of our drugs and you have some leeway there on that drug. I know for me with Imuran it did nothing on lower dose for me, but now I'm on max dose its made a world of difference.

Sending hugs,

love
Lily
[/b][/quote]


Really, that's very interesting to know. I'm a... skeptic I guess you could say (DH says pessimist) so I already have myself giving up on CellCept. I have a gut feeling that I can't conceive... so part of me is saying just give my the Cytoxan, hit me and let's get this thing over with. But my nephrologist is of course very leery since I'm still young and there are still question marks. No use stressing over the therapy until we know what we are dealing with though. Thanks for the information.

[alobreto]

Hi, Jade! style_emoticons/<#EMO_DIR#>/wink.gif
Sorry to hear that your kidneys are functioning less effectively than they should be, but hopeful that it IS the kind that doesn't continue to worsen.

I noticed you wrote something about conception. Have you considered harvesting some eggs from your ovaries to use later on should the time and circumstances become favorable? Just a thought.

It sounds like your doc is on top of things and really looking out for your best interests. I'd hang onto that one!

I wish you well!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[Jade79]

<div class='quotetop'>QUOTE(alobreto @ Jun 16 2006, 02:01 AM) Quoted post</div><div class='quotemain'>


It sounds like your doc is on top of things and really looking out for your best interests. I'd hang onto that one!

I [/b][/quote]


You're right about that one. He usually only sees worst-case pateints. What happened was, I got sick in 2004, it took 3 months to diagnose me, and I was allergic to the first 5 medications they tried. So needless to say I became very very ill. I ended up in the hospital with pleuritis and pericarditis (sp?), pneumonia, heart arythmia, and two very sad little kidneys. They thought my kidneys had shut down but once they were able to lower my fever (104.7), my kidneys kicked in again. By then he had already been assigned to my case and decided to do a biopsy, and agreed to stay with me even though I was dxed early Class III. Lucky for me because it seems things have progressed, at least he is watching out for me.

Thanks for the info. My biopsy has been scheduled for the 27th (2 wks).

[alobreto]

Hi, again, Jade! style_emoticons/<#EMO_DIR#>/wink.gif
And thanks for the update. Since you've had a kidney biopsy in the past, this experience won't be the great unknown. The first time for a procedure can be pretty scary, but you have an idea of what to expect.

I wish your news had been better and that things had not progressed at all, but it's good to know early enough that interventions can be made.

Again, thanks for the update. You're in my thoughts. style_emoticons/<#EMO_DIR#>/hugbetter.gif
Angela style_emoticons/<#EMO_DIR#>/flowers.gif