New Member Kansas City, MO

[kaysee]

Welcome to the forum Eric,
When I was diagnosed with WG my kidneys were down to 25%. After the first four rituxan treatments my kidneys went to 50%. But I relapsed two weeks after stopping pred and ended up in the hospital. It was too soon to do a second round of rituxan so I was given pulse steroid treatments and had rituxan again 3 month after the first treatment. I am now being tapered off pred again but things are looking stable. My kidneys have not gotten worse. Don't give up hope on the kidneys. You might get back some function. In the event you don't I will pray that they find a new kidney for you.

Karen

[amy.r.kahl]

Hey Eric54
I was looking at him but will he take MO Medcaid and Medicare ? I was wondering cuz he's at KSKU not KSMO. Did you have to get a referral ? I got put on disability and got Medcaid.
Thanks for any help
Amy


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[Eric54]

Hi Amy,

He is in kc kansas. I'm not sure about the insurance set up he has regarding mo/ks. I did not not need a referral. I still have commercial insurance through cobra right now.

E.


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[Eric54]

Karen,

I love to hear things like this. I just had my third txt treatment today. Amazingly some of my kidney function numbers have improved as well. Not overly improved, but, it's been a decline for months and felt good wen my labs came back and they showed improvement even being as minimal as it was.

E.


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[RudiK]

Hello Eric, and welcome to the forum. The WG patients on this forum are the most knowledgeable and supportive people when it comes to WG I got to know since I was diagnosed about 4 years ago. I'm sorry to hear about your kidney problems. I too have kidney involvement, but luckily the docs caught my WG in time, I lost about 60% of my kidneys, but the rest is good enough so that I don't need dialysis. Earlier this year I relapsed, after the docs and I decided to get off the Immuran and Prednisone and was hit in my left lung and just about all my joints. I'm just now back into remission and hope to stay there. I do, too, believe in God. Believing in God and the help and support from all the other patients on this forum, especially the few that past away during the past two years, have helped me get through this nasty illness.
Good luck, and I will keep you in my prayers.

[Miranda]

I know this has been a while but welcome! I am from the Kc area as well so it's nice to see someone so close. My sister in law is a doc at KU Med and she says Springer is really good! She tried to get me to see him but I love my doc too much hope things have started looking up for you since these posts!!


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[mrtmeo]

Hi Eric,
I don't want to give you false hope, but many do have kidney function improve to dialysis independent over time.
Usually improvements occur thru out 1.5 years following treatment.
It is important to keep the disease in check with either rounds of rtx and the right maintenance drugs.
Here is a graph showing typical kidney function after ctx.
View Image

For reference serum creatinine 355 umol/l is approximately a creatinine of 4 mg/dL.
A serum creatinine of 118 umol/l is approx 1.33 mg/dL.
Note: big spikes are flares, so it is extremely important to check for flares to conquer this disease.
Urine dipsticks can help show if there is blood in the urine to warn u if it is time to get things checked further for disease activity.

study here
Clinical features and outcomes of ANCA-associated renal vasculitis Seck SM, Dussol B, Brunet P, Burtey S - Saudi J Kidney Dis Transpl

Here is a creatinine units converter
Creatinine mg/dL umol/L Unit Conversion -- EndMemo

With the kidneys, it is ultimately important to keep blood pressure and blood sugar down.
I pray you get your kidney function back.