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Question? Worried sick.

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12 years 11 months ago #28994 by Val715
Question? Worried sick. was created by Val715
My son has blood in his urine that is visible to me for six day now. It has gotten much lighter but I don't know why it continues. It started a few hrs after his first rituxin treatment he may have had some blood in his urine before the rituxin but it wasn't as red and i didnt notice it till after the rituxin. I just don't know. He had an ultrasound of his kidneys and bladder a few days after I noticed the blood and it came back fine. I just don't know why he still has the blood in the urine. Hemoc released him from the hospital and said to just drink alot of water. He is scheduled for his second round of rituxin this tuesday. Has anyone else experienced blood in their child urine before? I'm so worried.
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12 years 10 months ago #29046 by kym
Replied by kym on topic Question? Worried sick.
Hi sorry to hear that If you look thru some of the stories u will find some of them similiar and helpful I have ran across a few that mention blood n the urine, but I myself havent,pray n 4 your son
The following user(s) said Thank You: Val715
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12 years 10 months ago #29054 by crystal lee
Replied by crystal lee on topic Question? Worried sick.
I hope things are starting to get better. Did he end up having another Rituxan treatment?
The following user(s) said Thank You: Val715
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12 years 10 months ago - 12 years 10 months ago #29068 by Val715
Replied by Val715 on topic Question? Worried sick.
Hi Crystal. Yes he had the second round this morning. Staying over night at the hospital for observation since he had side effects from the first. But so far he has no side effects from the second dose. He does still have blood in his urine but I can't see it anymore so it is much less. Hemoc said he will get round three next week. Three days after the first treatment his platelets were at 13. The highest they have been since diagnose. But today they were at 2. Was told retuxin takes time and that's if it even works. I sure hope it does because i i hate putting these meds in his body. How is your child doing? Hope all is well.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 10 months ago #29071 by Sandi
Replied by Sandi on topic Question? Worried sick.
Val - it can take 4 to 12 weeks after the last infusion to see results. Good luck!
The following user(s) said Thank You: Val715
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12 years 10 months ago #29072 by crystal lee
Replied by crystal lee on topic Question? Worried sick.
Hi
Glad doing better, sorry only at 2..how frustrating!! I am glad no side effects so far, hopefully stays that way! Please remember if treatments do not work there is still hope he can go up on his own, at this time that feels impossible and seems to take forever but it can happen! I do not have personal experiences with Rituxan but I have read so much and I have heard MANY times it takes awhile, but usually the remission seems to be good and last a great time :) Hopefully that will be true to you!

My little guy is ok right now..I think he is still hanging around 20, won't know for sure until the 19th unless something changes.

Hope this treatments kicks in soon! Good luck, keep us posted!
The following user(s) said Thank You: Val715
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12 years 10 months ago #29073 by Val715
Replied by Val715 on topic Question? Worried sick.
I do hope it works because when we weaned him off the prednisone his gums started bleeding again and got loads of petechiea. Back on the steroids too. Glad to hear your little ones numbers went up on the their own. Wish you all the best and I hope they keep rising :)
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12 years 10 months ago - 12 years 10 months ago #29074 by Val715
Replied by Val715 on topic Question? Worried sick.
Thanks Sandi. I'm hopeful.
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