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· sheila
36 Posts
Discussion Starter · #1 ·
:mad: I went to my doctor for my biospy on my kidneys. She said that I have a lot of scarring in my kidneys that is due to sjogrens and because of that there is no medicine that would help. She said that I could try steroids but she does not think it would help. She said that if I took the steroids I could only take them for 6 months at a 60 mg daily. So for the present she is keeping a close eye on me. I go back in 3 months for a check up. I will eventually be on dialysis. But I do not know when that will be. According to my doctor I am at Stage 3. She also has me on a low protein diet on 40 grams a day. Which by the way is not that much. How many ways can you fix vegetables and fruit. :lol:

· Registered
3,394 Posts
(((((((((((((((((Sheila)))))))))))))))) :hugbetter: Well that sure was a heck of a lot to take in :( I'm sorry that your outcome isn't as good as you thought it might be :(

I've done a bit of research for you this afternoon, because I've only ever had mild kidney problems and because I was wondering about some of the things that your doctor said about your outcome/treatment.

One thing that stood out was that she said this came about from your Sjogren's. Whilst some people get Nephritis with Sjogren's it's not very common at all. More likely are kidney tubule inflammation problems. Nephritis Stage 3 would usually be due to SLE.

The next thing that stood out was mentioning 60mg Pred and you could only stay on it for 6 months at that dosage. Was there any mention of a different dose for a longer time perhaps with the addition of an Immunosuppressant like Cellcept (Myclophenate Mofatil)? It has an excellent reputation for helping existing and preventing further deterioration of Lupus nephritis?

It just seems to me that there are many differing opinions out there to what your doctor has told you. It might be worth getting another opinion on this. Of course I don't know all your details and from what I've read there is a lot of scarring with type 3 and you can have lost up to 50% of your kidney function. But that still leaves you with the remaining 50% and that seems like it's worth trying to save!

Here's some further info that you might like to check out that I found this afternoon:

Type 3. "Focal proliferative nephritis". In this type of glomerulonephritis, the membrane in the kidney filter is thickened, and the cells supporting the filters are inflamed and overgrown. However this change affects only part of each kidney filter, and indeed many filters may not be affected at all.
This type of kidney disease in Lupus is intermediate in severity. Some people do require treatment with steroids and more powerful immunosuppressants, other people can have more gentle drug treatment. A long period of follow up in clinic is required, as there is a risk of this disease becoming active in the future, when more powerful treatment may be required. Many people with focal proliferative nephritis have good kidney function for many years, but there is a risk of kidney failure. There may be water retention in the body due to nephrotic syndrome

Classes III and IV: Patients with either focal or diffuse lupus nephritis are at high risk of progressing to end-stage renal disease and require aggressive therapy.
  • Administer prednisone 1 mg/kg/d for at least 4 weeks, depending on clinical response. Then, taper it gradually to a daily maintenance dose of 5-10 mg/d for approximately 2 years. In acutely ill patients, intravenous methylprednisolone of up to 1000 mg/d for 3 days may be used to initiate corticosteroid therapy.
  • Use immunosuppressive drugs in addition to corticosteroids in patients who do not respond to corticosteroids alone, who have unacceptable toxicity to corticosteroids, who have worsening renal function, who have severe proliferative lesions, or who have evidence of sclerosis on renal biopsy specimens. Both cyclophosphamide and azathioprine are effective for proliferative lupus nephritis, although cyclophosphamide is apparently more effective in preventing progression to end-stage renal disease. Mycophenolate mofetil has been shown to be effective in treating these patients and may be used alone or sequentially after a 6-month course of intravenous cyclophosphamide.
  • Administer intravenous cyclophosphamide monthly for 6 months and every 2-3 months thereafter, depending on clinical response. The usual duration of therapy is 2-2.5 years. Reduce the dose if the creatinine clearance is less than 30 mL/min. Adjust the dose depending on the hematologic response. Gonadotropin-releasing hormone analog, leuprolide acetate, protects against ovarian failure.
  • Azathioprine can also be used as a second-line agent, with dose adjustments depending on hematologic response.
  • Mycophenolate mofetil is useful in patients with focal or diffuse lupus nephritis and has been shown to be at least as effective as intravenous cyclophosphamide with less toxicity in patients with stable renal function.

Focal Proliferative Nephritis
Very early stage of more advanced lupus nephritis;
typically treated with high doses of corticosteroids, with excellent outcome.

That's a lot of reading to take in but it's definitely worth checking out and maybe getting a second opinion, these are your kidneys we are talking about Sheila :hugbetter:

sending hugs,


· Registered
2,444 Posts
Sorry to hear of that diagnosis. I hope it takes a LONG time before you would need dialysis - that GFR can stay steady a long time before reaching dialysis level. There are proactive measures you can take to protect the kidney functioning you have - like lower protein diet. You should ask about avoiding all NSAID's as well. There is one that is relatively safter to take I guess - can't remember the name at the moment of course! Has she mentioned lisinopril or another blood pressure medication which can help to protect the kidneys? I ask because that's what I was placed on recently to help protect my kidneys with a similar level of functioning as what you have.

I'm surprised that treating the Sjorgen's more aggressively with immunosuppressant mediction would not help with the kidneys. What medications are you on already again? Plaquenil can help Sjorgen's (not sure about kidney damage issues though) but it just takes a lot longer to do so. Often 2 years!

When you get news this serious it's always a potential good time to get a second opinion somewhere else. Good luck with everything - may your kidneys remain stable for a long while to come!

· Registered
1 Posts
So sorry that you are having problems with your kidneys . I also have been having big problems with mine to the point that they stopped functioning .
I was hospitalized for about two weeks , the function didn't get back to perfect .I now live with my function off they don't think it will never be perfect again ,I feel what you feel am so afraid that I'll be on dialysis
one day soon .Keep your head up ,a smile on your face when you can ,and
I'll keep you in my prayers .

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