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TOPIC: JC virus- Rituxin

JC virus- Rituxin 2 years 1 week ago #61080

  • kd
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I am about to start Rituxan next week. I have asked my hematologist about the Stratify JCV test and she does not recommend it. I am wondering why would you not have this test as the dreaded Progressive multifocal leukoencephalopathy can only occur if someone is JC positive.
I

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JC virus- Rituxin 2 years 1 week ago #61081

  • 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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I have never heard anyone here ever state they have had that test. Never. We've had a LOT of people use Rituxan over the years. You would think it would be a no-brainer to give the test but I think the reason is that a good majority of people would be positive for the JC virus. I've researched it and that's what I found....that most people would test positive due to prior exposure which seems to be fairly common. In that case, a person would not want to use Rituxan. I don't think that having had the virus is the biggest risk with Rituxan. I think that the body's general state of immunosuppression at the time of Rituxan infusions plays a bigger role in acquiring PML. It seems as though patients that have been using other immunosuppressants prior to or during Rituxan is the bigger risk, or those with low white cells or other health issues. I think this is what doctors have to take into account when prescribing Rituxan and most do not.

If it helps any, we've never had anyone here that reported having PML. It appears to be very rare which is good, but it is a very scary reality nonetheless.

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JC virus- Rituxin 2 years 1 week ago #61083

  • kd
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Dear Sandi,
You are right, it is scary. The black box warning is frightening. Thank you for your support and history on what others have done. Yet, as the one taking the risk, I would like to make that evaluation, if I am positive for the JC virus. As you know PML only affects JC positive patients.
Today, we are fortunate to have a other treatment options.
One more question, the steroid used in combination with Rituxin; some physicians use pulse decadron or methylprednisolone during the infusion , does one offer a more effective outcome or offer less side effects?

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JC virus- Rituxin 2 years 1 week ago #61084

  • 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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Personally, I think it's a good idea to use steroids with Rituxan if it's suggested. I felt great the day after the infusions and I think it was due to the Solumedrol that I had. It will also help to hinder any immediate reactions that occur during the infusions. I'd rather be safe than sorry on that one.

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JC virus- Rituxin 2 years 1 week ago #61085

  • kd
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You are an angel.

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JC virus- Rituxin 2 years 1 week ago #61086

  • 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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No, an angel would fix your problems. :) I can only make suggestions and tell you what I know. Good luck with your decisions.

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JC virus- Rituxin 2 years 1 week ago #61087

  • EmilyK
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They gave me tylenol and benedryl during my Rituxan treatment. I slept through the events. Sadly i had no response. Good luck.
Diagnosed Jan 2015 at age 50 with 13,000.

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JC virus- Rituxin 2 years 1 week ago #61088

  • 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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I had those too, along with Solumedrol.

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JC virus- Rituxin 2 years 1 week ago #61090

  • Hal9000
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They gave me Tylenol, Benadryl, and a bit of Dexamethasone. Ten mg I think - only that day and not part of a 4 day pulse. They say to be well hydrated too.

IMHO kd, your chances of remission is pretty high with your good steroid response. And, if you don't get remission from Rituxan then you should be able to get remission through Promacta or Nplate (like EmilyK). A more difficult outcome would be a partial response to Rituxan (rare).

Emily, are you and Promacta getting along as good as before? No updates?

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JC virus- Rituxin 2 years 1 week ago #61121

  • EmilyK
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Thanks for asking. I have not had a blood test in a while. Unless I have symptoms I am drug free! I did have some bruising a bit ago, had a blood test then took 12.5 for a few days, tested again and they went back up. So far so good. Not a remission as in normal numbers but a remission in the sense that i have no symptoms so I take no drugs!
Diagnosed Jan 2015 at age 50 with 13,000.

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