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Discussion Starter · #1 ·
just back from clinic i thought i was doing ok but doc say my kidneys in slow decline need to do something.want to put me back on high dose steriods i said after the last dose never again they make my life ****, i really cant go back on them going to tell them i cant take them they are worse than any lupus.i completed rituximab 8 weeks ago that does not seemed to have worked.i have had cyclophosimide too i wonder are there any other drugs i havent taken this is my last resort i really cant take steriods.what will happen if i refuse them,.... please help
 

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Hi Helen

I am very sorry that you have had such a dreadful day today. I am new to the Lupus diagnosis myself, so am not qualified to answer your specific medicinal needs. Only thing I can suggest is can you not talk to your GP or consultant about your concerns?

I just wanted to answer your post to let you know you are not alone today.
 

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Lisa_S
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Hi Helen. I've had a number of kidney flares, and I also HATE prednisone. It's given me stretch marks, shrunk me by several inches, caused me to need a hip replacement, and made me the recipient of many mean teenage comments when I was retaining so much water I looked like a watermelon on crutches with a back brace. It sucks, and I share your hatred.

Unfortunately, it's one of the mainstays of treatment for lupus nephritis. Have you had a biopsy to confirm exactly what type of inflammation you have going on? Prednisone is indicated for most of them, but the dosages are different - In VERY general terms, if you have one of the "better" classes of inflammation, you can get away with a lower dose. However, the more serious types usually require a higher dose, at least for a little while until things are back under control. The only way to know exactly what is going on in those cells is with a biopsy - my protein spillage 4 months ago indicated something quite serious, which on biopsy showed to be only moderately so. (still needing treatment asap, but not quite as dire as I'd been preparing for...) For nephritis, prednisone is typically given in conjunction with an immunosuppressant - I've used Imuran with good success, but I think the "gold standard" is cyclophosphamide.

What can happen if you refuse treatment? In the worst case scenario, lupus can cause so much damage that the kidneys eventually fail, leading to the need for dialysis or a transplant. We cannot survive without functioning kidneys. Given the choice between a few months of prednisone and all that entails or a lifetime of being chained to either a dialysis machine or immunosuppressive therapy, I've chosen the short term pain.

Are you under the care of a nephrologist with knowledge of lupus? Mine always says that treatment of lupus nephritis is more an art than a science, but when it comes to life-sustaining organs, I'd like to have science and experience on my side. Rheumy's are more about the entire picture, nephrologists only care about kidneys, so they are in-depth experts in that specific field.

I'm sorry you're having such trouble, and I don't know if this is helpful. I think everyone here probably has more or less the same feelings about prednisone - it stinks, but it's life-sustaining. I love it/I hate it. Until something better comes along though, I think we're stuck with it. I'm sending positive thoughts your way.

All the best,

Lisa
 

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Hi:

I am so sorry you are going through this. I amctually in almost the same position. I have recently found that my kidneys are involved (after rhumy brushing off positive RBC and protien in urine for over 6 months).

Nephrologist is now following and I will probably have a kidney biopsy this month.

I am on CellCept and although kidneys are still declining the degression is much slower than it would have been without it. I don't know what the next steps will be for me.

I do agree with Lisa....I would take the steroids no matter the consequences to save my kidneys. You could also inquire as to steroids short term and some other immuno supressant for longer term?

Sending warm comforting (((HUGS))) you way.

Stephanie
 

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Cellcept is something that should be tried if it hasn't been tried already... some doctors are using it as their first line therapy against lupus nephritis due to lower risk of side effects, etc.
 

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Discussion Starter · #6 ·
thanks everyone
i have stage four nephritis and have had two biopsys,i was on cellcept then imurane which i am still on,i had cyclophosimide,and now rituxamb,now they want to put me back on high dose steriods.is there any more meds i havent taken,i think i have taken them all.:mad:
 

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((((((((((Helen)))))))))) :hugbetter:

I too would take the Pred to try and get things under a bit of control. I know, its the drug we love to hate, but if it means saving our kidneys then I really don't see we have a choice :(

What dosage of Imuran are you on, I read in an old post it was 100mg? There's room for improvement with 150mg and even 200mg if you aren't a light weight. I must admit I've seen a lot of kidney patients here doing well on Cellcept, it's helped things from escalating out of control...........were you on a decent dosage of that when you tried it?

Hang in there, there must be a solution to this.

love
Lily
 
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