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ErinG
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/25/2009 9:19 PM (GMT -7)   
Hi everyone,
 
I am new to the forums and I was wondering if anyone here has CKD.  I was diagnosed in February 2009 after I had a physical (after 10 years of not having one) and my bloodwork showed reduced kidney function.  I was referred to a nephrologist, and a rheumatologist, and after lots of bloodwork, 48-hour urine collection, an ultrasound, a CT scan, x-rays, and a kidney biopsy...they determined that I had primary Sjogren's syndrome, which caused distal RTA and bilateral nephrocalcinosis.  It also caused interstitial nephritis where my immune system was actually attacking my kidneys and causing tons of inflammation.  They put me on prednisone initially to bring down the inflammation, then Cellcept which I'll be on forever.  I've tapered down from 60mg to 20mg of the prednisone and I can't wait to be off it.  My kidney function has improved from 31% in March to 44% last week, so my doctors are pretty happy.  The jury is still out on how the kidney stones have improved.  My last urine collection showed my citrate levels were still low, so they increased my potassium citrate.  I'm scheduled for another ultrasound in a month to see if the calcifications are smaller.  I'm not really sure what the plan is for that.
 
It's definitely been a roller coaster this year.  I had no idea that anything was wrong with my kidneys, but I'm sure glad they found it when they did.  My nephrologist said that if it had gone undetected for 6 more months my kidneys would have been too damaged to avoid dialysis and transplant.
 
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 20mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin 
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/26/2009 8:55 AM (GMT -7)   
Erin G
 
I would like to welcome you to the HealingWell forums.  Glad you posted but not under the health issues.. smhair
 
I also have CKD but so far my kidney function is staying in a healthy range.  Wow 10 years so much can happen when you don't have physicals.  I remember the days I could go a few years without seeing a doctor now it seems I see at least one specialist a month.
 
I'm sorry to hear your kidneys are giving you a go for your money.  But it is good that they found what has caused all the distress on your kidneys.  Mine took quit a few years to find the cause.
 
Some members will come along here shortly that are currently on Cellcept.  SO far what I've heard from them that it not an easy drug to tolerate.
 
Kidney stones and blockages I am VERY familar with.  I can understand your statement that the jury is still out.  They are sneaky little pains.
 
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........ I think I have it all


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/26/2009 9:43 AM (GMT -7)   
I have CKD secondary to lupus.  I also take prednisone and cellcept and whole bunch of other stuff!  I started off on 120mg of prednisone initially!  I'm down to 10mg a day;  i've been on it for ten years at various doses!  It's definitely a love/hate relationship!  I'm sorry you are dealing with so much.  So many people find that they are in renal failure after a routine physical.  How devastating!  44% is definitely decent kidney function.  I pray that  you can continue to hold that number and avoid dialysis!  Keep us informed on how your test turn out!  Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/26/2009 9:54 AM (GMT -7)   
Hey Erin! Welcome to HW! This is a wonderful site to get information and make some friends who can relate to you. I too have CKD due to lupus and they started me out at iv of pred and then 80 mg orally along with 2000 mg of cellcept . Right now I am down to 20-25 mg of pred depending on pain. I complelty understand about can't wait to get of the pred, for me it looks like I will be on it for the rest of my life but whatever it takes to keep me alive, guess I can't gripe to much about it!
How is the cellcept treating you? I am hoping it is okay. For me, not so much but I will be moving to another drug in 2 weeks, that will hopefully help with my kidneys. I believe that my kidney funtion is 45 %, it has dropped a little bit but not too much, but it also will go from 60 % down to 40%, guess it depends on what mood my kidneys are in. LOL!
 
Keep us updated and hope you stick around :)

Amy

 

Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Lupron, Zofran, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


ErinG
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/26/2009 4:51 PM (GMT -7)   
Thanks to everyone for the warm welcome! smurf
I really haven't had problems with Cellcept, I think the citrate causes the most stomach problems for me.  I've gotten bronchitis twice since starting on it so I've been more careful about disinfecting common surfaces at work and using hand sanitizer.
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 20mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin 
 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/27/2009 3:56 AM (GMT -7)   
Hi Erin,
Welcome to Healingwell!
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


ErinG
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 8/25/2009 9:43 AM (GMT -7)   
Hi everyone,
I'm down to 17.5mg of pred, and I'm going to see the nephrologist tomorrow.  Hopefull my bloodwork is good enough to go down to 15!  I'm having another ultrasound to see how my kidney stones look.  I'm a little nervous, mostly about the, "Have you been exercising?" question.
 
-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 20mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin 
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/25/2009 12:42 PM (GMT -7)   
I'm glad your dosing is coming down and hopefully will come down even more  turn
 
I wish the doctors would understand that most of us are so busy that it should be considered our excerise... yeah    I know I run around all the time in fast forward its gotta count for something.  Use that on him tomorrow... idea
 
I hope everything goes fine...
 
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........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/26/2009 5:29 PM (GMT -7)   
I hope everything goes well. I know the evils of predisone so I understand why you are looking forward to reducing your dose. I agree with Laurie about the exercising. From the minute I am awake until I go to bed it feels like I am in high gear. I don't know where I would find the time or especially the energy to exercise right now.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 

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