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Imuran

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12 years 4 months ago - 12 years 4 months ago #32604 by Matixsmom
Imuran was created by Matixsmom
Had an appointment with Matix's Hem/Onc doctor yesterday after a weekend long stay in the hospital for a multitude of infections and low platelets. We did try Winrho for the first time, which went ok. We have been very conservative with treatment, but we have been told we need to buckle down now. So, after the summer when (hopefully) all the infections that have overcrowded his little body every week slows down, the doctor wants to try Imuran. Has anyone tried this? What is the success rate? Any pros/cons? We can't start now because his immune system is too low at this point in time, but with summer coming up and school will be out, the hopes are that the infections will slow down. Any input is so much appreciated!!! Thanks in advance.
  • 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 4 months ago - 12 years 4 months ago #32630 by Sandi
Replied by Sandi on topic Imuran
Wow, how old is he? Imuran is a pretty potent drug. I just started it a few days ago for Lupus and it took me a very long time to agree to it. What are his counts?

I don't think I have ever seen a child on Imuran before.
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12 years 4 months ago #32655 by Matixsmom
Replied by Matixsmom on topic Imuran
He is 8 years old. He stays low a lot, even to 0. He just had Winrho for the first time this past weekend. We are also going for an Immunology consult because he is sick all the time and all of that has to come out ok before beginning the Imuran. :unsure:
  • 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 4 months ago #32667 by Sandi
Replied by Sandi on topic Imuran
Has he been tested for CVID? I don't think I'd agree to start Imuran either until he's seen an immunologist. Good call.


ghr.nlm.nih.gov/condition/common-variable-immune-deficiency
The following user(s) said Thank You: Matixsmom
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12 years 4 months ago #32672 by Matixsmom
Replied by Matixsmom on topic Imuran
Wow!!! Wow is all I can say!!! Sounds just like Matix. I am going to call my Hem/Onc dr and ask questions about this.
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12 years 4 months ago #32675 by Matixsmom
Replied by Matixsmom on topic Imuran
So, I was reading more about this and it talks about the gene mutation on the Tumor Necrosis Receptor Factor gene. My daughter, Matix's twin, has Familial Mediterranean Fever Syndrome and TRAPS ( Tumor Necrosis Factor Receptor Associated Periodic Syndrome) both mutations. One of the mutations is on the TNF gene. TNF gene is also the gene effected for CVID...very weird. Matix has never had the DNA test for this. I am really wondering if this is it!!! Sandi, if this is the answer, I am going to fly to wherever you are and hug your neck!
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12 years 4 months ago #32715 by Ann
Replied by Ann on topic Imuran
There are several slightly different immune deficiency disorders that might be diagnosed. The immunologist will test for them all by looking at the immunoglobulin levels including the IgG subclass levels. It's good that he's being tested before taking immunosuppressants. I got tested afterwards and that was a mistake.
  • 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 4 months ago #32718 by Sandi
Replied by Sandi on topic Imuran
I would be so much happier if I were wrong and your little boy tested negative for all of it! I know how badly you want answers though. It's frustrating. Please let me know how he is and what they find out!

Ann, what happened to you from Imuran? I don't remember.
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12 years 4 months ago #32775 by Ann
Replied by Ann on topic Imuran
Sandi, Imuran made me so sick that I didn't take it for long but CellCept gave me many side effects including joint pains and capillaritis and I also had constant chest and ear infections. I also had bladder infections which resulted in bladder inflammation that took over 6 months to resolve. Actually it went away when the effects of the CellCept had totally worn off and my count was back to under 10.
  • 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 4 months ago #32780 by Sandi
Replied by Sandi on topic Imuran
I made him start me on a low dose - 50 mg's. So far, no side effects so if blood work is good in 3 weeks, I'll go to 100 mg's. I take it before bed hoping to avoid the nausea. So far so good. I am afraid of infections though, had plenty of that on MTX.
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