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lol Love the shrugging description. My appointments consist of my doctor looking at my chart, heavily sighing, looking at me, heavily sighing, dropping his head into his hands as he reads my test results, more heavy sighs...sometimes this stuff can be hard on our docs, too!!
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Iam new and my son who is now 11 was diagnoised with WG December 2013, we think from ringworm medication. He had a mass removed from his lung, which was accidently found. He was on predisone for 6 months now on methtraxate shot once a week. Hes been have UTI symptoms before he was diagnoised, and coming up negative for a UTI. He has been to a nephrologist and had urine tests done and all they can come up with is his urine is consentrated. I dong believe that, does anyone had similiar situations or think this is inflammation flare ups?? Im still reading and new with this and Im worried...Any suggestions or what i can try or think of to get hkm checked for...anyone else have experience with this medication..or kids with WG??? Please anyone with info thanks!!
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Hi, LadyLeeza, and welcome to the forum. I'm sorry your young son has WG, but you have come to the right place. Yes, there have been parents of kids with WG on here, and many of us have used methotrexate. I think you might want to start your own thread under New Member Introductions, because more people might notice it that way. Not everyone reads every post, but most of us read the posts from new members. There is also a lot of info you can search in the archives, but I think current replies are the best, so you get some direct support from the great people here. So, go to New Member Introductions at the top of this page (since that's the topic this thread is on), or from the main Forum page, and once there, click Post New Thread. We are a caring and sharing group, and you will get some responses! I personally don't know much about urine and kidney stuff, but others do. Good luck, and wishing the best recovery for your son.Originally Posted by Ladyleeza77
Anne, dx'ed April 2011
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Thank you so much!
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Hey Hannah
Welcome to the forum. Can certainly relate to the liver issues. I'm one of the unfortunate few that can not tolerate methotrexate or Imuran. Both cause my liver enzymes to go through the roof. I currently take 2000 mg of Cellcept a day. Tolerating it well and thankfully no liver issues. Rituxan is being reserved as a (big gun) drug for me.
I probably should amend this. I've had Rituxan before. A total of three different times. The last treatment being the one that probably induced remission and Cellcept being my maintanence drug. Because I'm limited in the drugs that I can take, Rituxan is the last resort in case of major flare/relapse.
Last edited by Jaypfei; 01-26-2015 at 05:06 PM.
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I heard Rituxan was really bad side effects...hope all goes well with you...good luck!!
Wannabe jet pilot
Side effects listed can be severe and often overstated to satisfy the lawyers. Many of us have taken rituxin with minimal or no problems.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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Thats good to hear..
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Posters with weggie kids can always pm me too. Sometimes it's days before I scan the forum.
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Hey Hannah, welcome and happy birthday. I would second what folks have said about making sure you have an experienced doc - the name of the game is staying ahead of the game! This is a wicked disease that can move awfully quickly & destructively, and unpredictably. Also, about Rituxan (Rituximab) - there is payment help available from the company itself, which may help you. The side effects sound scary, but Rtx has helped my daughter (now 16) a lot. Best wishes! Wtw
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