Diagnosed 11-year-old

[annekat]

The only other thing I can think to add is to ask if she's on bactrim?
Its an antibiotic but I understand it can have a dual purpose in both fighting off lung infection in immune suppressed patients but also has some sort of role in fighting Weg GPA too. I don't know why that is.
Has anyone else ever heard or read about that?

I remember hearing more about that in my earlier days of reading the forum. It's been suggested that Bactrim can play a role in keeping people in remission. Not only because of the lung thing but because it may control other bacteria that reside in the nasal cavity and sinuses, etc. I would assume these other bacteria could get out of control and trigger a flare. At least that's my paraphrase of what I think I may have read. But I don't know to what extent this is a proven fact. Maybe someone else can shed more light.

[Gab122]

edit: I changed typo of word 'hate' to 'share'.
Ugh - I should have checked before posting.

Carrie, thought I'd Share this story about two girls that got dx with Wegener's - a good message.
https://m.youtube.com/watch?v=6jjrZj9a-Ns

Gab

[annekat]

That was a great share, Gab! It made me teary to think how much more these girls are going through than I ever have. It's so nice that they have each other!

[AnaMama]

Gab122, I completely identify with this story. Thank you for sharing.


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[mater]

My 15 year old daughter was diagnosed in December. Since she is older, they were able to give her shots to suppress ovulation before the CTX. I don't know how well that works to protect her fertility, but I felt we had no choice. Her kidney was also affected - 90% of the filtering units were blocked and creatinine etc got worse after that for about 7 days. She is near normal labwork now so I know that kidneys can recover amazingly. My daughter got 7 pheresis treatments and also the high dose IV steroid and then 60 mg (she is down to 3 now) She got RTX as well. They did not want to put her on Bactrim because of the kidney function issues. They did put her on about 5 months later when her kidneys were doing better. Is she having to take phosphorous binders? My daughter hated those! The pheresis treatments(albumin exchange is the same thing I think) seemed to be key in the short term. CTX and RTX were not given until the 13th day. We were only in for 17 days. The treatment sounds similar to what my daughter got. She got 1 transfusion. They didn't seem to want to do those. Her hemoglobin was at 6.6 at one point but they didn't do another transfusion. This is incredibly hard for you all, even more so than for us. Hang in there. The first 7 or 8 days all my daughter wanted to do was listen to me read a Jane Austen novel. Take care of yourself. I walked the basement halls to get some exercise.

My daughter also had 2 days of dialysis.
Sorry this post isn't well organized! I just wanted to quickly respond.

[AnaMama]

Thank you so much for your reply, mater. I love that your daughter just wanted you to read Jane Austen to her. We've been indulging in movies and frequent trips to the gift shop. So bad!
I'll be asking her doc about Bactrim this morning. Also want to ask about why we didn't start with the CTX, though probably because of the risk of infertility and since she hasn't had her period we can't harvest an egg. Anyway, thank you. It's important to me to hear how others have been treated and are doing so I can gage whether we're getting quality care. Looks like our care is similar. I'm delighted to hear your daughter is doing well!


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[nagesh]

hi Carrie
Very sorry to know about your daughter's condition. my son was also diagnosed for wg at the same age, I can understand your feelings.
Be confident during jan this year my son had a flare in kidney he was also given rituximab, at that time we worried a lot and confused whether Rtx started working or not because protein in urine constantly rising during 1 st and 2 nd month, next 3 rd month onwards gradually it started reducing so for my son RTX started to work only after 8 weeks.

[AnaMama]

hi Carrie
Very sorry to know about your daughter's condition. my son was also diagnosed for wg at the same age, I can understand your feelings.
Be confident during jan this year my son had a flare in kidney he was also given rituximab, at that time we worried a lot and confused whether Rtx started working or not because protein in urine constantly rising during 1 st and 2 nd month, next 3 rd month onwards gradually it started reducing so for my son RTX started to work only after 8 weeks.

This is what is happening with my daughter. The protein in the urine had been steadily rising even though it's been over a month since her first rituximab. She's had two RTX infusions so far. Her MPO antibodies were off the charts and now they are at a 3, apparently normal is 0.3, so that's better at least. Her kidneys have not gotten any better even though we've been in hospitals for about 6 weeks now. We haven't started Cytoxan yet and Im thinking that's exactly what we need. Maybe we should have started that weeks ago, that's my fear at least. Can't look back, gotta look ahead.
I'm sorry your son is going through this. Thank you for your concern.


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[annekat]

Carrie, Cytoxan won't give instant results, either, but for most it seems to be a little faster than RTX to show results. That doesn't mean the RTX is not already working, just that you are not yet seeing results. I was never on RTX but only CTX and prednisone for my initial treatment, and it took maybe two weeks to a month for me to show some improvement, but I was still in pretty bad shape given the side effects, etc., which I did get used to. After a month and a half I was able to be out in public selling the pottery I make, but not without some help from friends in loading and unloading my vehicle. And of course I was careful to do a lot of hand washing and use sanitizer. This is the way WG goes no matter what med you take. So don't beat yourself up for not having started CTX earlier. It is a rough drug, but for me, worth it if it means getting better faster. Some people get fast results from RTX, too, and no doubt your docs were hoping for that. It is all very complicated and variable. BTW, my CTX was in the form of oral pills taken daily at home, which some say is more effective than a CTX infusion. Still, if Ana is in the hospital, it might be more likely they will give her an infusion of it there, perhaps followed by pills taken at home. I was only in the hospital overnight for a battery of tests, so am luckier than her in that respect, and I've never had kidney involvement, though I still could. I just hate to hear of such a young person having a much harder time than I did. More big hugs to you both, and prayers for Ana's improvement in the near future!

[AnaMama]

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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