Week in hospital confirmed kidney involvement after 4 year fight

[Cekmsover]

Hi All,
After negative biopsies in my sinuses, gastro and skin, I finally tested postive in the kidney and im shattered.

I went into hospital for a check up as I was feeling crap, then was kept in and they did more testing over a few days.

They were going to send me home and not even bother doing another biopsiy, and then said lets biopsy the kidney, I said may as well and it come up positive.

I have normal renal function in my bloods but 4 of the 24 filters are being effected so around 10-15% effected at the moment.

I have had Rituxan in the past which seems to have always got rid of ANCA - PR3 and cleaned up my symptoms and got my well.

I floated for a while as i was feeling well, had a flare and now they want Cytoxan tuesday morning, which I am struggling to deal with. They are insisting its the only way and I would prefer as a last resort to go Rituxan and just go back on Mycophelonate for maintenace.

Has anyone taken Rituxan for ealry signs of Kidney involvement, or must it be Cytoxan?

C

[Psyborg]

C - I would think RTX would be just as affective as CTX. I'm really sorry you found you had Kidney involvement :(

[JeanMarie]

I have kidney involvement & used RTX--it worked well.
I hope whatever is chosen works well for you too.

[drz]

Hi All,
After negative biopsies in my sinuses, gastro and skin, I finally tested postive in the kidney and im shattered.

I went into hospital for a check up as I was feeling crap, then was kept in and they did more testing over a few days.

They were going to send me home and not even bother doing another biopsiy, and then said lets biopsy the kidney, I said may as well and it come up positive.

I have normal renal function in my bloods but 4 of the 24 filters are being effected so around 10-15% effected at the moment.

I have had Rituxan in the past which seems to have always got rid of ANCA - PR3 and cleaned up my symptoms and got my well.

I floated for a while as i was feeling well, had a flare and now they want Cytoxan tuesday morning, which I am struggling to deal with. They are insisting its the only way and I would prefer as a last resort to go Rituxan and just go back on Mycophelonate for maintenace.

Has anyone taken Rituxan for ealry signs of Kidney involvement, or must it be Cytoxan?

C

Cytoxan works quicker so they might be trying to save your kidneys. I got RTX first but kidneys were still failing so they went to CTX which seemed to stop the decline in kidney function and lungs. Both are damaged from delay in diagnosis and beginning of treatment.

CTX can create some problems but not as many as loss of kidney function. Good luck in your treatment and attaining another remission.

[sbeach78]

I also have kidney involvement, and they are wanting to take me off CTX and put me on RTX. Maybe its a meds tolerance thing.

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[LisaT]

I don't have experience with this, just wanted to say I'm really sorry to hear this. It's completely understandable that you're grieving. I hope you can draw some strength from everyone here supporting you and thinking of you. I'm glad it's not worse in terms of percentage of your kidney function. Hopefully the treatment will turn it around and you can get back into remission. Let us know what's decided. Maybe you can ask the doc their rationale for saying it has to be ctx rather than RTX?

[lag713]

I'm so sorry. I don't have any advice to offer. Would you mind describing your symptoms when you went to the hospital?

I'm so surprised that you had normal renal function based on the blood tests but in fact had a positive kidney biopsy and problems with 4/24 filters. I've always thought that blood tests would be sensitive (or even more sensitive than a biopsy). I've never had a biopsy of my sinuses, gastro, skin, or kidney as my docs think I was caught early and would likely only have false negative results. I wonder if I have undetected problems with my kidneys. I'm only on MTX and showing increased signs of inflammation. I'm due for more blood tests this month.

Good luck working with your physicians to find the right treatment for you. I hope you're feeling better soon. Thank you for sharing.

[annekat]

I, too, am sorry to hear about this and hope it is being caught early enough to avoid permanent damage. My intuition would say to hit it with the CTX, for starters, since it works fast. If you get good results, you could then switch to MTX or even RTX as a maintenance thing. But if your docs have already decided on RTX, more power to you, and that may work perfectly well in not much time. Good luck.

[Cekmsover]

HI Lag713,

I presented to hospital just really feeling sick for a long time and being under treated in the maintenance phase after previously being not too bad. I kept getting negative biopsies so in a way there was always doubt that something else was driving my PR3 like infection, parasites or something else. Anyway I know for sure now and have a fight but positive thoughts and energy all the way. I did the first Cyclo infusion today and it was straight forward, it was the hardest decision of my life to take the medicine but would have been foolish not to considering the situation. Work closely with your physicians so you are under the best control you can be.

For what its worth I traveled to different parts of the world to try and get it sorted with as least possible medicine as I could but sometime we need the chemicals I gather.

That said I will never ever stop saturating my body with micro nutrients particularly raw Cruciferous vegetables.

https://www.drfuhrman.com/library/anti-cancer-foods-cruciferous-vegetables.aspx

The way I see it if we are breathing we can make a positive impact on our health and the lives of others.

[lag713]

Thank you for your reply, Ceksmover. I will keep your experience in mind so I won't be afraid to get a biopsy whenever the time comes. I'm sure it was upsetting to get a positive biopsy but also relieving in some ways to have no doubts about what was driving your PR3.

I'm glad your first cyclo infusion went well. I hope the rest are uneventful and you return to remission quickly.

We just need to keep on keeping on in whatever way we can. Thank you for the positive impact you've made on my health.

[Jaha]

I am so sorry that you are having to go thru this complication, but really glad to hear that you're persistence got to the source of your feeling so poorly. So glad that you made the right decision for tx. I wish you all the best for a speedy remission. Take Care

[annekat]

I'm glad things are moving along, and thanks for the link about the cruciferous veggies. I bookmarked that.