What do I do? Help!!!

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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/5/2009 10:43 AM (GMT -7)   
Okay, as most of you know I started Cytoxan for Lupus nephritis bout 3 weeks ago. about 3 days after the treatment my pain got less, kidneys improved, no more night trips to the bathroom. Well last week my joint pain started coming back...Then I just started feeling really tired and just felt ill. I noticed my feet/ankles where about 2 times their size from edema. Thursday morning I had people asking why my face was swollen especially my eyes. Friday and Saturday morning my eyes where extremly swollen. Well, I notice my urine color had been changing. It went from normal yellow color to pink to brown and now it is brown with a hint of pink...At times its really foamy, sometimes it isnt. The last two night I ran a fever of 100.3-100.8 but during the day it is 96.9-97.8. I don't know what I should do. For some reason problems seem to hit me on the weekends. Any ideas? I have increased my prednisone from 15 mg to 30 mg which has helped with the pain but not so much the urine...

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  Ambien, Flexeril, Ultram, 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...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/6/2009 10:47 AM (GMT -7)   
Amy PLEASE go to the doctor you should be getting highly infected. It happened to me as fast as your is occuring now. If it was me I would go just with the swelling. If the fluids move to the lungs and heart you can deal with Congestive Heart Failure.

Dealing with steriods are harsh but you have to be monitored and call your doctor when these things happen.

The urine and low grade fever is what I am really worried about. Your kidneys can get infected really fast so please call or go in.

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........


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/10/2009 4:03 PM (GMT -7)   
Well on Monday night I ended up going to the ER...apparently my kidneys are failing AGAIN! I had IV prednisone, IV antibiotics, and fluid on Monday....Apparenlty I am in a bad lupus flair. GRR...anywho, I was diagnosed with Pleurisy, dehydration, kidney issues to name a few... I was summoned back to the lab on Wednesday to get my kidney function checked and it has not gotten any better. So tomorrow they are upping my cytoxan and giving me more IV prednisone. Since Monday I have orally been taking 60 mg or pred and it hasnt seemed to kick in yet. I guess I am scared, there is not another option after the treatment I am currenlty on. Anywho, just wanted to update on whats going on...

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  Ambien, Flexeril, Ultram, 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...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/12/2009 6:30 AM (GMT -7)   
WOW sorry I was not on the last 48 hours!!!!!
 
I knew it!  Something was going on with you and your body was telling you "Hey I need help here!"  My heart is breaking for you.  I realize how hard it is to have to deal with the roller coaster so many times.  The ride for me is never fun.
 
PLEASE please keep us updated.  I know our forum is small but the few of us that are here need to help each other and new members as they come along.......
 
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 9/12/2009 7:47 AM (GMT -7)   
Amy,
I am so sorry to hear you are having such a difficult time. I will keep you in my prayers and hope this treatment will work for you quickly. Just the thought of being on all the predisone makes me cringe.... and that is only a very small part of what you are having to deal with. You are one strong lady.

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


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/13/2009 11:14 AM (GMT -7)   
Thanks gals! the support means a lot. I think the prednisone is starting to work! Last kidney funtion test my kidneys are stayed at 33 percent function...At least its not getting worse. I will continue to take pred until things start going up! hopefully that won't take to long. I am starting to loook like Alvin the chipmonk but I guess I can take that to my kidneys failing...Thanks for the support :)

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  Ambien, Flexeril, Ultram, 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...

 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/13/2009 1:02 PM (GMT -7)   
I find when I have the predisone moon face that people will comment and tell me how good I look. I always laugh because the only reason they think I look better is because the puffiness takes away my facial wrinkles. I guess you have to find your silver lining somewhere.

I am glad you are doing better and I will keep praying your kidney function improves.

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


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/14/2009 4:30 PM (GMT -7)   
Amy I'm glad you caught it so quickly.  Hopefully it won't lose any more function and you will only get better from here on out.  I will keep my fingers and toes crossed for you..
 
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........


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/14/2009 4:54 PM (GMT -7)   
Amy,
I"m so sorry you are facing these circumstances! I really know how you feel, i've been right there where you are! Hang in there girl! I'll be praying for you! Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/23/2009 5:13 PM (GMT -7)   
Okay, here is an update. My kidneys are still flaring pretty bad! Keeping me on 60 mg orally until i stop flaring. I am also probably looking at another IV of pred, but I will find out for sure on Friday when I go to my rhuemy. I guess because of my kidneys and the prednisone, I am having a very hard time with my BP and edema. I have been to my nephrologist office 2 times this week to get my BP checked to make sure my home device is correct and it is. I am currently taking 40 mg of lisinopril and 25 mg of microzide yet my numbers are still reading in the morning 142/126, lunch time 139/119, dinner 133/116, I just took it about 10 min ago and it was 129/115. So I am deffiantly having a problem with my distolic number. I have cut out salt and sodas...can't get it to go down. Anyone have any suggestions? What about for edema. I can press on my leg and I will have an indention stay for about 3 minutes (no exageration) when I walk it feels like I have jello jiggeling around in my feet and legs. LOL! Anywho...I guess that is it with my health.
 
On a fun side...i got a kitten on Saturday! He is great...the perfect cat I could have asked for. he loves to cuddle (when he's not running around like a wild thang) If I am taking a nap, he will lay on my chest or back pretty much the whole nap time. It is crazy how quickly animals can capture your heart!!! I love him so much!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, 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...

 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/24/2009 4:07 AM (GMT -7)   
I wish I could give you some good advice, but I am clueless. I know my BP always spikes when I am on high doses of prednisone. I started prednisone yesterday and only 15mg and my BP is up.

I am so happy you were able to get a kitten. I have a big ole' sheep dog so there is no way he would lay with me when I take a nap. We both couldn't fit on the couch. LOL

My class has been praying for you during their morning prayer. I'll have to let them know you got a kitten. Boy do little kittens love kittens.

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


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/25/2009 4:53 PM (GMT -7)   
Oh wow Elizabeth, that really means a lot that your class has been praying for me. Tell them I said thank you very much and that the prayers are starting to work! Kidney function has gone up a little more, actaully the highest its been in quite a while. I am still spilling massive amounts of protein and blood so they are going to keep me on 60 mg of pred for at least another month until my next apt with my nephrologist to try and get the function higher and blood and protein lower but as of now, no more IV's of pred for awhile tongue

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, 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...

 

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