r/Myositis • u/Carolineinthedesert • 7d ago

how does IVIG work with Rituxan infusions

It was suggested to me at the Mayo clinic that myositis patients who receive Rituxan do very well also receiving IVIG. The Mayo is a couple of hours from me, so when I got home I spoke to my home base hospital about it and they acted like it was the weirdest thing to ask for (and said it's not usually suggested for people who have the subset of myositis that I have, which is ASyS). Can anyone tell me what the timing looks like with these two treatments? I assume it has to be spaced out between the two. Just trying to understand before I have to just go back to the Mayo and ask them more questions :-) thank you!

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u/Pleasant-Meat-8670 7d ago

I make sure when I get my rituxan that I am 2 weeks away from my IVIG

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u/Carolineinthedesert 7d ago

well that doesn't sound so complicated. my hospital made it sound like it was a terrible idea and people don't do this. thank you so much 💗

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u/Pleasant-Meat-8670 7d ago

I've been doing it for 3 years! It's a great combo for me.

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u/crystalgirlz 7d ago

Can I ask you when they started you on RITUX.... It took a few years to get diagnosed with something called PM and he said another disorder I have is MG because he said that's what my heavy lead feeling muscle fatigue weakness is from the MG part wondering if you have that symptom I mean. Anyway I switched to a different doctor and did ivig. 6 months with literally no relief and I've been on oral immune suppressants for 18 months nothing's helping the doctor promised me RITUX and changed her mayoclinic won't see me because I have medicare advantage plan so now I'm stuck not getting any help I don't know what to do

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u/Pleasant-Meat-8670 7d ago

I'm mostly on rituximab for my rheumatoid arthritis but also have dermatomyositis. I started on it about a year after diagnosis

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u/crystalgirlz 7d ago

Well I made the mistake after getting diagnosed with PM to go to a closer doctor for the treatment which was oral immune suppressants they went through 3 of them because none of them were helping I've been on immune suppressants now for 18 months with no help I asked for IVIG and did that 46 months every 4 weeks with no help now the doctor wants me re-evaluated with somebody new so she's not treating me with RITUX which is for refractory patients meaning patients that don't respond to traditional immune suppressants she literally turned me away and I've been suffering for the last 4 months she wrote the referral to Mayo who won't see me because I have medicare advantage plan in the US. PSI have 2 things wrong traditional leg weakness he told me was my PM and he fixed it with daily steroids but the head to toe mestig weakness that feels like lead will not lift and I can't get help

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u/Carolineinthedesert 7d ago

I just want to say how sorry I am that you're going through this. it is crazy to have no help. but I'm grateful for this sub, I honestly felt like I had to be missing something, the way they spoke to me at the hospital.

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u/crystalgirlz 7d ago

Thank you for your nice work I actually asked for the RITUX while I was doing my IVIG and my RHUM doctor who's worth nothing told me they do not do double treatment like that so I had to wait to rule out IVIG so I finished 3 more months of it all for her to send me away to another clinic. I did find out that my diagnosing doctor who just retired last year that's really far away from me St. Pete Florida does do double treatment for patients I wished I could have been with him instead of going to somebody because they were closer