What labs to do before starting IVIG/Rituximab?

[Nickster]

Wouldn't a positive result indicate autoimmunity though? Even if it is a low positive? They set a negative range, at-risk range, and a positive range.


Could you tell me more about these patients? Did they have the JC Virus and develop PML? Did they get better once rituximab was stopped and out of their system?



May I ask how you managed to get approved for both? I have been fighting for almost a year, through three different doctors, and have been denied all the way to the top. My most recent rheumatologist was confident last week that she can get it approved and even scheduled my first infusions for yesterday and today, but at the very last minute, we got word from my insurance yesterday morning that the pre-auth was denied. A peer-to-peer review between my rheumatologist and my insurance was done yesterday and they want us to submit an EMG report... Ugh!

We kept my son on an individual grandfather insurance plan and it has a wide network that it covers and approves most things requested by the doctors. The old plan is the way insurance was prior to the Affordable Care Act/ Obamacare. I know that insurance can be tricky, but, try to talk to a senior case manager at the insurance carrier that has some power to make those decisions. I know that it must be backed up by the doctor the need for the treatments. My son had a cardiac arrest and had severe neuropathy so he was in a dire situation making the treatments more forthcoming. Keep trying.

 

[Nickster]

He has done RTX? How is he doing tjese days?

My son is doing better. He used to be in a dark room with all of the sensitivities and now each day he asks to go to the beach or get out with people. He still has a long road to recovery, but, he is greatly improved. Thank goodness! I hope that you are doing well!

 

[Gingergrrl]

My son is doing better. He used to be in a dark room with all of the sensitivities and now each day he asks to go to the beach or get out with people. He still has a long road to recovery, but, he is greatly improved. Thank goodness! I hope that you are doing well!

This is such great news and I am so happy to hear about all of his improvements. Is he still doing IVIG and/or Rituximab or is he done?

 

[crypt0cu1t]

My son is doing better. He used to be in a dark room with all of the sensitivities and now each day he asks to go to the beach or get out with people. He still has a long road to recovery, but, he is greatly improved. Thank goodness! I hope that you are doing well!

Thats so great to hear! Unfortunately I am in a severe flare again.

 

[Nickster]

This is such great news and I am so happy to hear about all of his improvements. Is he still doing IVIG and/or Rituximab or is he done?

He has done 7 rounds of IVIG and is approved for 11 more rounds. He did 1 round of rituximab and will do that each 6 months.
How are you doing? I hope your well!

 

[Nickster]

Thats so great to hear! Unfortunately I am in a severe flare again.

Sorry to hear that. I hope the flaire passes soon. Take care.

 

[scienceshea]

My son has greatly improved on both IVIG and rituximab. He has completed 7 monthly IVIGs (4 days of infusion done monthly) and 1 rituximab (2 doses 2 weeks apart by IV and to be done every 6 months in this order). His sensitivities to sound, light, smell, temperature and stimulation have gone away. He still gets some reactions to food. But, overall he is better.

I have been mostly away from PR throughout the summer, but I thought of you and your son at times, and this made me SOOOOO happy to read. Sending positivity your way!

 

[Gingergrrl]

He has done 7 rounds of IVIG and is approved for 11 more rounds. He did 1 round of rituximab and will do that each 6 months. How are you doing? I hope your well!

That is great news about your son @Nickster! Is he back at home now? I am doing very well (all things considered!) and thank you for asking. I am done with IVIG but will be continuing with maintenance infusions of Rituximab (with next in Nov/Dec). I will be re-doing some auto-antibody blood tests in a few weeks to compare to 2016 (pre-treatment). I'm also doing a very slow tapering down off Cortef and started Physical Therapy once a week.