New gal with kidney question

[Courtney6201]

Hi everyone. My story: lots of (what I & my GP thought) were URIs since Sept. 2017. Felt really crappy in Apr +wk of joint pain. Doc thought I might have Lupus & made an appt. w/ a Rheum. for May 9. April 30th I coughed up lots of blood (sorry...should have given a grossocity warning) & ended up in the ER May 1st.Someone must have called the Rheum because he appeared a day or 2 later as if conjured & let me know I had an autoimmune problem. (Funny side note: more than 1 doc commented on the rarity of a Rheum. sighting in the hospital:)Anyway, he was back a day or 2 later explaining all about PR3 & Wegener's GPA. Had 3 nights of 1000mg solumedrol. Home on May 7 taking 60 mg Pred, 100 mg Immuran & a plan for Rituxan (just got my 3rd dose today). So currently: my giant Pred head is the size of that big weird golf ball thingy at Epcot, can't walk 10/15 feet without hvy breathing, hungry like a grizzly bear coming off a 3 day drunk ALL THE TIME, very little sleep, & the roid rage is getting ridunculous. The other day some Sirius DJ let someone wax poetic about "Last Dance with Mary Jane" for 2 MINUTES & then DIDN'T PLAY IT. I love that song. I fussed at my hubby as if it were his fault & made him change the channel even though I was sitting right there (i'm not proud of that last part). I spend half my time screeching & the other half apologizing (except to my beloved children who continue to leave Crocs in my path which I will eventually trip over & kill myself). So that's me right now...still myself...just a giant headed, straight crazy, Jabba-the-Hut levels of bloat version of me:( I have several friends right now dealing with medical issues that are not nearly as treatable as GPA so as I pray for them I remind myself to count my blessings & remember it ain't all about me:)
To get to the question I'll have to give you some (more) boring-arsed background stuff so sorry in advance for that. Basically: in the hospital my serum creatinine was 2.4-2.5 & my GFR was in the low 20s (my lung biopsy showed minimal damage but my kidney biopsy showed min to mod damage). Went to the Neph on Mon. & had crea of 2.9 & GFR of 17 & I hear "worsening kidney func, possible Rituxan fail if this contiues". My lizard brain screams "Rituxan fail! Press the panic button! NOW!!!". So that was Mon. Today saw the Rheum. & he basically said that was crazy talk...Rituxan takes several wks to make a diff & have to be patient & wait & see. So my question is: did anyone with kidney issues have rising serum crea/falling GFR during Rituxan? Did it eventually begin correcting? How long did it take? How long til you started feeling a little better? I'm thankful for any info from folks who've actually gone through this:)

[Alysia]

I dont have kidneys' involvement but for most of us it takes time for the rtx to start working. Usually 3 months.
Tagging gilders, he is our kidneys' expert.

[Masha]

Hi Courtney, Alysia is right, Gilders is your go to guy for kidney experience, others here too. I can address your prednisone anxiety. We all hate it, but it is a necessary evil. I can identify with the bloat and hunger. My Rheumatologist also told me to stop coloring my hair. The Wegeners has done sinus and dental damage on me. So now I am a pie faced, grey haired, 68 year old with a lot of dental implants. BUT, life could be much worse, as you said. Did you ever hear about the game where you sit in a circle with others? You each write your problems down and throw the paper in the center, then you pick up someone else’s paper. After reading a couple of them, you want your own problem back.
As you are learning, this disease strikes many of us differently. Response to medication differs also. You are not crazy for panicking when you expected to have a fast response to Rituxan. I was frightened and talked crazy to my Rheumatologist too. By following this site I have learned many people receive infusions for years. As you improve the prednisone will decrease, but don’t be surprised if something happens and you have to jack it back up again. Your fears and confusion are normal. There is no tried and fast rule about when we feel better. Some have remission, only to relapse, others stay in remission for years. We all wish we could control this disease, however the tricks we learn on this site will help dealing with it much easier. The most important thing that I have learned, you must have doctors experienced with Wegeners. If you are in a large city, finding qualified physicians is much easier than it is for patients living in remote areas. Allow yourself an occasional pity party, but then pull yourself up by your bootstraps and focus on all the good in your life-use the power of positive thinking. There will always be someone here for you.
Masha

[gilders]

Hi Courtney. I can tell you about my kidney involvement.
I was diagnosed with Wegener's 23 years ago. I was only 17 at the time and don't recall exact numbers for creatinine and eGFR, but know that eGFR must have been below 10 as I was on a strict fluid intake and had haemodialysis 3 times per week.
My treatment was limited to just prednisone and Azathioprine (Rituximab hadn't been created back then, I couldn't tolerate Cyclophosphamide and other drugs like methotrexate were ruled out due to kidney function).
The good news is that my kidneys recovered well. I only needed dialysis for around a month. Again, I'm uncertain of the numbers, such as when dialysis was stopped, or the highest eGFR I had after I'd achieved remission .
Over the last 23 years I've had relapses and each relapse has taken away more of my kidney function. As I receive treatment as soon as I see signs of a relapse, the drop in kidney function is about 15% after each relapse. These smaller (in comparison to my 90%+ initial drop) are permanent. Once my function got as low as 25%, my nephrologist explained that even without another relapse, once your kidney function is at 25%, it will continue to fall.
I'm currently at 12% and trying to get a transplant.

So as a general rule, your kidneys can recover well after a sudden drop in function. But chronic, slow deterioration is likely to be permanent. Once function drops to around 25% it is likely to continue to slowly drop, even if you're in complete remission.

My outlook for your situation is fairly positive as far as your kidney function returning.
My main concern would be the potential effects of any furure relapses. You need to catch them asap to prevent the smaller, permanent drops in kidney function.

If your kidneys fail to improve and you have dialysis or transplant questions, feel free to ask.

[Courtney6201]

Thank you Alysia & Masha for the responses & encouragement! And thank you to gilders for your story. Facing GPA at 48 is not easy but I cannot imagine GPA at 17. I admire the heck out of you. I read your threads on dial. & transplant & am praying that all the pieces of your particular puzzle fall into place so you get your kidney asap. I avoided this site like the plague at first because I just wasn't emotionally ready to deal with all the daily yuck of GPA & I just plain old didn't want to know. I'm glad I'm (maybe:) out of the denial stage now and ready to get on with it. Thanks to this site & all of you for the lifeline you provide! Dang it! Now i'm getting emotional. Freaking prednisone!!:)

[whatthewhat]

Hi Courtney,

My daughter was diagnosed as a young teen, and when she turned 18 I turned The Folder with lab #s over to her, so forgive me for not having them to refer to!

She had been on Mtx after Rtx at diagnosis, and the docs said we could use the word "remission". Then her labs started getting worse, and then finally after I pushed and pushed they gave her Rtx, which yes, takes a while to work. But the WG kept attacking in that "while" and she eventually needed Ctx (and a doc who was more, ready to treat it aggressively) to really stop the progression along with the other rounds of Rtx.

[whatthewhat]

... I want to add:

I think it's important to get your labs done at the same place for consistency in readings & results, and to know your own #'s in the areas in which WG is affecting your own body, and to trust your self and your intuition about your own body. Pediatric-onset WG does in general move faster than adult-onset, but the kidneys are nothing to take for granted, no matter the age of the patient.

Also, I have read that there there are certain foods that make the steroid side effects worse. And some that can make things better. If you search this site you can read some really good stuff on that topic.

[Courtney6201]

Thanks for the good info whatthewhat! It sounds like your daughter is doing well:) So thankful...can only imagine how difficult it must have been to have your child get a GPA dx. I'll do some searching for the pred info...got the "Coping with Prednisone" book as well but it's nice to get advice from others too. Thank you again!