diagnosed with stage 4 lupus nephritis a month ago.

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kema 728
New Member


Date Joined Oct 2013
Total Posts : 5
   Posted 10/7/2013 1:56 AM (GMT -6)   
Im 19 and i was diagnosed with stage 4 lupus nephritis a month ago. I didnt find all the info i needed to know on the internet.
I want to know the chances of kidney failure and the outlook long term?will i ever be able to live a normal life?my feet are always swollen and my joints are stiff or throbbing at some point in the day.

confused

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1470
   Posted 10/7/2013 9:03 AM (GMT -6)   
Hi! Sorry you have been diagnosed with this. Being honest with you, it sucks, but definitely not a reason to not live a normal life! I am currently on dialysis due to lupus and I have a normal life, just have to make time for treatment. Been on it 2 years!

about progressing to kidney failure depends on how aggressively they treat it, your body, and your understanding the medications you are taking and make sure you take them. Yes, your joints are hurting as lupus is doing what it does, once your medications kick in, the pain should gradually start getting better. What medications are you on? Do you have any specific questions I can answer from my own personal experience?
Amy
Lupus Moderater


dialysis from lupus nephritis

kema 728
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Date Joined Oct 2013
Total Posts : 5
   Posted 10/7/2013 12:03 PM (GMT -6)   
Im taking prednisone and cell cept. My next appointment with the rheumatoligist is on the 9 of October. So i wont know how well the medication is working until then.
How long have you had lupus before it started to attack your kidneys?? I was also misdiagnosed a year ago. Do you think if they did more test they could have caught it earlier??

Bsime
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Date Joined Apr 2006
Total Posts : 1344
   Posted 10/7/2013 5:02 PM (GMT -6)   
Lupus does not attack kidneys in every case.  Many lupers do not have any kidney problems.  The first thing is to get your immune system under control and it sounds like your rheumy is trying.  Secondly there are meds to help your kidneys.  I have lupus nephritis and my kidneys are ok now although I do take an ace inhibitor to help them.  As for controlling meds, each patient responds differently so there is no universal treatment that works for all.  We are each an experiment in treatment to some extent but most cases are treatable.
 
I recommend that you also see a nephrologist and have him work with your rheumy. 
 
As for diagnosing lupus, many patients go through a long period of time before it is diagnosed, sometimes years.  This is very common because it is a difficult disease to diagnose in early stages and has a thousand faces.
 
Living a normal life?  Good chance but lupus can be a difficult disease to treat for some.  My advice is to be aggressive with your medical care and ask lots of questions of your doctors.  Be you own advocate.  If you are unsure or not doing well get a second opinion but make sure the doctor is experienced with lupus.  Find a local support group if there is one near you.  Your swelling is caused by your kidney problems and as your immune system is brought under control and if you take meds like an ace inhibitor those problems will go away.  I have been in full remission for almost 8 years and off all controlling meds (not the ones for my kidney function) for 3 years.  I still have arthritic problems but nothing like the first year but I am in my 70s so arthritis goes with the turf.  And if you are wondering, old guys get lupus too.
 
Be an optimist...it is the attitude that will serve you best at this stage and coping long term with the disease.
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

kema 728
New Member


Date Joined Oct 2013
Total Posts : 5
   Posted 10/7/2013 8:43 PM (GMT -6)   
Thanks bill. I just needed to be reassured by some one who has the same condition that i can relate to. My mom is handling everything with the doctor since she works in the hospital as a nurse. So i will let her know about getting a nephroligist. She has me on a diet of certain foods and im on a exercise regimen since i gained alot of weight from prednisone in a short period of time. I really appreciate your advice and i will stay optimistic. :-)

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 10/7/2013 9:43 PM (GMT -6)   
Prednisone changes your metabolism and affects some people more than others. You can control your weight but you need to adjust how much and what you eat. I was on 60mg daily for a year and did not gain anything and on it for another 5 years at lower doses. Just adjusted what I ate and how much.

The common condition that affects those with lupus nephritis is proteinuria. Protein is filtered by your kidneys into your urine resulting in blood that cannot hold enough fluid. You get swelling in your lower body or in my case, everywhere. Treatment is with diuretics and usually an ace inhibitor like lisinopril. This is tricky stuff and best left to the kidney doc (nephrologist). I gained as much as 20 lbs of water weight in a few days until things were brought under control.

I also have another AI disease, polymyositis, which was a much bigger challenge for me. It was resistant to treatment and I lost 40 lbs of muscle in a week resulting in being quadriplegic and needing a feeding tube. My docs saved me but I entered a rehab hospital as a quad and completely unable to swallow with little hope of recovery. That was almost 8 years ago. Last winter I skied 25 days......that is why I say to stay optimistic and take each day and challenge as it comes. Don't worry about the future, just take care of what you have to each day and the future will take care of itself. It is hard at your age to have this kind of perspective and I certainly didn't. Hang in there. Chances are your disease will be controlled and you will live a "boring" life. Not really boring I hope but not the kind of adventure you are currently having.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 10/7/2013 9:44 PM (GMT -6)   
Forgot to post this link. Sure sign of either old age or "lupus fog."

http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/

Also, make sure you have a sense of humor about everything......
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

kema 728
New Member


Date Joined Oct 2013
Total Posts : 5
   Posted 10/8/2013 1:28 AM (GMT -6)   
Last year when i was in the hospital i was bleeding internally. They misdiagnosed me with idiopathic thrombocytopenia purpura. I did have low platelets but i think it was caused by the lupus. They put me on prednisone 60mg and it was horrible. My joints were always throbbing and i had bad acne on my arms and legs. Now im on 20 mg prednisone and this is more manageable for me. I can get through the day .that is truly a miracle story of what you told me. I try not to think of the bad but with lupus its unpredictable and that's what scares mre

kema 728
New Member


Date Joined Oct 2013
Total Posts : 5
   Posted 10/8/2013 1:30 AM (GMT -6)   
Oh and thanks for the link bill

maryLupus
New Member


Date Joined Oct 2013
Total Posts : 2
   Posted 10/13/2013 3:11 PM (GMT -6)   
hello...im 44 years old and also i have been diagnosed with stage 4 of lupus nephritis...i was in chemo for more than a year to bring stage 4 to 3...i started once a month and them once every 3 month..it was really hard for me..now im taking mycophenolate 500mg twice a day and the prednisone and `it helping me a lot ...i try to eat right, walk a lot and i learn to follow my body ,rest a lot and not to think that i have this illness so i can enjoy live with family and specially my kids...

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 10/13/2013 4:26 PM (GMT -6)   
Mary, glad you are doing better and your kidneys are improving.  Hope they keep on getting better.
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

maryLupus
New Member


Date Joined Oct 2013
Total Posts : 2
   Posted 10/15/2013 9:10 AM (GMT -6)   
Bsime ty so much for the link...im having a lot of problem with my memory "the lupus fog"...and ty so much for those encouraging words...
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