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ErinG
New Member

Date Joined Jul 2009
Total Posts : 9

Posted 10/3/2009 4:33 PM (GMT -7)

Hi everyone,

I last saw my rheumatologist 3 weeks ago and she gave me the green light to drop to 12.5mg of prednisone per day. Since lowering my dose I've had bloodwork done twice. The first time I noticed my eGFR dropped from 41 to 38. I wasn't too worried because it had dropped before and gone back up. The highest it has been since staring Cellcept is 44. I had bloodwork done again on Thursday, and my eGFR dropped again to 36 (my creatinine is 1.7). Should I be worried? Is this to be expected when trying to taper off prednisone? I see the rheumatologist again in 2 weeks, but I'm not scheduled to see my nephrologist again until December. Do you think I should call about this?

Erin

29 year old female (full-time accountant/part-time student)

Dx'd 2009: Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon

Rx: Cellcept 500mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 12.5mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin

MJLD
Veteran Member

Date Joined Jul 2007
Total Posts : 905

Posted 10/4/2009 8:45 PM (GMT -7)

I would call!! It's better to be safe than sorry. I would say "I wanted to make sure she saw the drop and remind her i'm dropping on prednisone and see if I should continue with the taper." Please keep us posted! Judy

Irishmom4
Regular Member

Date Joined Sep 2008
Total Posts : 268

Posted 10/5/2009 4:21 AM (GMT -7)

Sorry I don't have any experience with Cellcept but wanted to send good thoughts your way. Good luck!!

Elizabeth

Dx'd with Crohns 1984 and polycystic kidney disease in 1996

Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, folic acid, and Enalapril.

LLPLUV
Forum Moderator

Date Joined Mar 2009
Total Posts : 1048

Posted 10/6/2009 8:22 AM (GMT -7)

Erin

I'm sorry if I haven't welcomed you yet but hopefully I have already. Welcome to our forums!!!

I would call as soon as you can. I agree its better to be safe then sorry. When it comes to your health and your kidneys you can never be too safe.

I wish you luck and keep us updated.

Laurie

Kidney Diseases and Disorders

Moderator

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

ErinG
New Member

Date Joined Jul 2009
Total Posts : 9

Posted 10/21/2009 9:04 AM (GMT -7)

Hi everyone,

I decided to wait it out to see if my most recent tests showed improvement, but my kidney function was the same. I saw my rheumy on Friday, and she recommended that I try to see my nephrologist earlier than my appointment scheduled in December. She said I may need a higher dose of Cellcept, but she wanted to see what the nephrologist said first. I now have an appointment to see him on the 27th, so I will let you know how things go after that.

29 year old female (full-time accountant/part-time student)

Dx'd 2009: Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon

Rx: Cellcept 500mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 12.5mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin

LLPLUV
Forum Moderator

Date Joined Mar 2009
Total Posts : 1048

Posted 10/22/2009 9:00 AM (GMT -7)

Yes keep us updated about the appointment. I was hoping your kidney function would of improved. Increasing your Cellcept sounds terrible. Have you been on a higher dose before?

Laurie

Kidney Diseases and Disorders

Moderator

ErinG
New Member

Date Joined Jul 2009
Total Posts : 9

Posted 10/23/2009 11:44 AM (GMT -7)

Laurie,

I've been on 500mg twice a day since I started Cellcept so if they do decide to do an increase this will be my first. I really haven't had any negative reactions to it so far, so hopefully if my dosage gets bumped up I won't have any problems. My rheumy said probably 750mg, but I'll see what happens on Tuesday. She and my nephrologist don't always see eye to eye when it comes to dosing!

Now I need to find a place that still has flu shot so I can stay healthy...

29 year old female (full-time accountant/part-time student)

Dx'd 2009: Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon

Rx: Cellcept 500mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 12.5mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin

ErinG
New Member

Date Joined Jul 2009
Total Posts : 9

Posted 11/2/2009 10:38 PM (GMT -7)

I saw my nephrologist last week and he said everything was fine. I had blood drawn the morning of the appointment so he would have the results by the time he saw me, and my creatinine was back down to my normal 1.5. He said not to worry if it increases .1 or .2, that it's probably a fluctuation caused by how much I eat or drink the day before my bloodwork. That's a relief! He said if it went up to 2.0 or 2.5 that he would consider increasing the Cellcept or doing another biopsy. So I hope that doesn't happen!

29 year old female (full-time accountant/part-time student)

Dx'd 2009: Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon

Rx: Cellcept 500mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 12.5mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin