anybody with LUPUS Nephritis

[kellychang]

hi,just wish you guys can share...

i have been a LUPUS Nephritis for about 14 yrs..

so far...i am on medication...

7.5mg steriod, 75mg imuran and 8mg conversyl...

i am just 25 yrs old...

[leahb133]

I also have lupus nephritis type iv.
Right now i am on prednisone 40 mg, cell cept 1000 mg twice a day and lisinopril 2.5 mg (to control the protein).

I have had it for about 3 years now.

Last year they had me on a 6 month Cytoxan Infusion.. that helped a lot.

What else did you want to know? :)

[kellychang]

how come u take so much predisolone?

u nv take any imuran?

i take another one..coversyl to control my creatine n kidney function..

[kellychang]

btw..i cant do any cytoxan..as i already did about 17 of it..

i m just wonder..like this..

what my doc can do to help my condition improve??
with lot worries...

[Lily]

Hi Kelly,

Your doctor can do some of the things I mentioned in the other post you made, you still have other options, either increasing your Imuran or starting something like Cellcept, so you should talk with him about them.

love
Lily

[kellychang]

cell cept?

i nv heard before n nv used before..

dunno whether is found in malaysia not...

will ask my doctor ..

thanks everybody!!

[leahb133]

My dose of Prednisone is so high becuase it is controlling the protein and the inflamattion in my kidneys.. I think Prednilosone is maybe given in dfferent doses. Someone please correct me if I am wrong.

[Joandublin]

Yes Leah

You are right. Prednisone is prescribed in various different doses and, like you say, it all depends on what is required to control your symptoms. Nowadays doctors will prescribe the least amount possible for the shortest time possible. Having said that many people are on low dose prednisone for a long time.

Ive been on prednisone now since January 2006 but Im tapering off so, fingers crossed, I will be finished with it shortly:)

Take care
Joan:rose:

[kellychang]

oic..

thanks everybody

[Clare.T]

Kelly

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[kellychang]

sorry sorry..

i always forgot it...

hahahah...very sorry about that....

[SoCalEric]

Hi Kelly,
I was first diagnosed with Lupus Nephritis around 12 years ago. In fact it's how I found out I had Lupus, after many years of troubles my Doc. said was just a "bad phase". Started chemo w/Cytoxan nearly imeadiately afterwards. Did 10 treatments the first time and it worked wonders. Last year Nephritis returned, more chemo, 4 treatments this time and it helped immensly again. I understand your Doc. wanting to keep your exposure to Cytoxan down, but I've had 14 treatments and if Nephritis occured again I'd be willing to do it again, and Iv'e met people that have had MUCH more than me. I've never had Cellcept, but it's been mentioned by my Doc. and I don't doubt that I'll be trying it somday. I've been on as much as 100mg of prednisone. Last time started at 80, dropped to 60 for a few months and have now taped off it completely (YAY!).

Best Wishes,
Eric

[kellychang]

wah..

That is good...

you only spent 1 year time to totally without predisolone...so great!!

at 1st,my doctor also said i am very good ...but i still have to take 7.5mg predisolone..which he told me is the minimum...

i really hope that...i can get well soon!!!

[kellychang]

wah...

congratulation...you only spent 1 year times then can now no need to take any more predisolone and get well so soon...i am so envy..

i also hope that i can get well soon too!!!