Diagnosed 11-year-old

[annekat]

I appreciate your perspective, Annekat. Im feeling pretty good about our care at this point. I think the Cytoxan wasn't used right away because Bactrim must also be used if Cytoxan is used and, as I now understand it, Bactrim isn't good when there's kidney involvement. So they must have held off until necessary. I think now is the time though, and I have a feeling that's what I'm about to hear (scheduled to talk to the doc in 10 minutes). If my understanding is incorrect, you'll can correct me, BTW. I want to learn.


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I don't think there's anything wrong with your understanding, except possibly that Bactrim must be used with Cytoxan. I was not started on Bactrim until a couple weeks after starting CTX, and it seemed like a bit of an afterthought. My doctor isn't the most experienced with WG. I am now on methotrexate and still taking Bactrim. If it is not good with kidney involvement, then obviously Ana should not take it, unless the doc says it's OK, but I would guess she could still take the CTX without it. Bactrim is a safeguard and a prophylactic against certain lung infections, but I've never heard of it being mandatory with any particular drug. If your doc says it is, I guess you should listen to him, as I'm absolutely not an expert. I've found on this forum that different docs say different things and have different perspectives, even among good docs and WG experts. There is not always one right way. Ana's doc sounds like a good one, but the more info you have the better. Perhaps by the time you read this, he will already have explained things to your satisfaction and set your mind at ease. Best of luck in all of this, I know it isn't at all easy making sense of it, and I doubt if many of us ever really do. Most of what I know, or think I do, was learned right here on the forum, from people with good, well known WG docs, or from people with less well known docs. There will always be conflicting info and we just have to weed through it and see what rings true for us in our particular situation, with consideration of what our docs say.

Also, don't hesitate to correct me if what your doc says goes against anything I've written. I need to learn, too.

I might add that I think many on the forum, with or without kidney involvement, have been put on RTX as the first line treatment, without CTX or any of the other standard immunosuppressants. So there is not necessarily a right or wrong here. RTX is a relatively new drug and doctors overall are still learning how to use it and which protocols will best fit certain kinds of patients.

[AnaMama]

Thank you Annekat. Our doc did put me at ease about the decision to wait on the Cytoxan.

The kidney biopsy results weren't good. She has only 10% of her kidneys with good function, 30% are in question, and 60% is completely not functional. She will need a transplant at some point in her life. But for now she'll be managing with what she's got. The good news is that the inflammation had gone away, so the disease is not actively attacking anymore. The disease took her kidneys as it was backing away though, like a truck on a highway...you can put the brakes on it but it will keep going for a bit before completely stopping.


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[annekat]

Thank you Annekat. Our doc did put me at ease about the decision to wait on the Cytoxan.

The kidney biopsy results weren't good. She has only 10% of her kidneys with good function, 30% are in question, and 60% is completely not functional. She will need a transplant at some point in her life. But for now she'll be managing with what she's got. The good news is that the inflammation had gone away, so the disease is not actively attacking anymore. The disease took her kidneys as it was backing away though, like a truck on a highway...you can put the brakes on it but it will keep going for a bit before completely stopping.


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I only pressed "Like" because I like the way you described what is going on, the truck on the highway. I'm very sorry to hear about the extreme loss of kidney function and probability of a future transplant. I know some on here have come back from very severe kidney involvement and gotten most of their function back. But they could relate this much better than I. Starting another thread with kidneys mentioned in the title might get their attention. I'd have to look back to see if any of them already wrote on this thread. Also, you can always use the search function for specific topics discussed in the archives. At least I can "Like" that Ana's inflammation and disease activity are under control and shouldn't be causing much further damage for now. That is very good to hear. I hope she gets to leave the hospital soon and live life a little before facing the prospect of a transplant. Keep us posted.

[drz]

I was never given Bactrim cause I am allergic to Sulfa but I was bothered with frequent bladder infections while on CTX for several months and it had to be held often when my WBC got too low. Extra protections like isolation and sterile precautions were often used too during those periods to try reduce the risk of infection. I was treated several times too with various antibiotics.

My kidneys and lungs were both hard hit and I needed a couple weeks intubation and umpteen plasma exchanges and both IV RTX and CTX and got very close to needing dialysis but things finally turned around (I survived) and in a few years I recovered to near normal kidney function labs even though I only have 40- 50% normal function. People have redundant kidney function built in as only one is needed to maintain normal kidney function labs.

Younger people also tend to rebound and recover quicker and better than us old seniors too. Youth is an asset in recovering from GPA (Wegs).

[Middle of no where]

Check out book by Sarah Ballentyne
The Paleo Approach, Reversing Auto immune
Changing my eating, which would be difficult for an 11 year old, has given normal blood results for me.
Worth a try, health, it all starts with food.

[mater]

Check out book by Sarah Ballentyne
The Paleo Approach, Reversing Auto immune
Changing my eating, which would be difficult for an 11 year old, has given normal blood results for me.
Worth a try, health, it all starts with food.

I have wondered about diet and after reading your post I started a thread in the general forum called How to tell if dietary changes are effective

[Alysia]

Check out book by Sarah Ballentyne
The Paleo Approach, Reversing Auto immune
Changing my eating, which would be difficult for an 11 year old, has given normal blood results for me.
Worth a try, health, it all starts with food.

We never saw any weggie here who was cured by diet. If I am wrong, anyone around, please let me know. Middle of no where - you can tell your story under new members introduction. If you just want to advertise this is not the place. Sorry.

[Alysia]

Dear AnaMama, my heart is going out to you and your daughter. I cant add much to what the others said. Plasma pheresis might help with the kidneys. You need to make sure that the docs have enough experience with treatment of kids with wg. Also ask to make consultations of as many experts as possible. It takes time for rtx to work. About 2-3 months. Meantime enough pred might "hold" the beast. I am ignorant about ctx. Sending many prayers ♡♡ please update us.

[whatthewhat]

Definitely echoing that kids often come back from kidney damage much better than adults do. As far as Cytoxan, we held off on it for a number of reasons until there was kidney involvement (100% involvement, 23 or 26% function, it was touch and go) and then she went on Cytoxan. The Cytoxan knocked the WG beast down pretty hard and fast, while the Rtx took more time to work.

[AnaMama]

Thank you for your care and warm welcome to this forum. I truly appreciate it. I know I'll be here asking questions as we learn how to live with this beast of a disease. This forum is such a rich resource and it's people are so caring.


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