(((((((((((((((((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
http://www.kidney.org.uk/Medical-Info/kidney-disease/lupus-types.html
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.
http://www.emedicine.com/med/topic1597.htm
III
Focal Proliferative Nephritis
Very early stage of more advanced lupus nephritis;
typically treated with high doses of corticosteroids, with excellent outcome.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=100&z=17&page=3
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,
love
Lily
