jenjenn711
12-02-2013, 03:38 PM
Since my post a few days ago, things have really gone downhill, and the doctors do not know what is wrong. If someone wouldn't mind reading this over and seeing if you have any suggestions of things we could ask the doctor about, I would SO appreciate it!
My dad has had all but the last Rituximab infusion. It was certainly hard on him each time (he suffered things like very low blood pressure and ended up hospitalized again). After the last infusion he had, we thought he was doing okay and we figured we'd do the last infusion in a week or so and were looking forward to seeing serious results. Four days after the infusion, the doctors pushed for him to be discharged and, as a compromise with my mother, moved him to a rehab floor instead the next morning. He was unhappy about not going straight home, but seemed to be doing okay until about lunchtime his first day in rehab. His blood pressure dropped, he was moved to critical care, and it started looking as though he'd had a stroke. Finally, it was confirmed that he'd had three strokes. Even after all that, he was still able to sort of talk, move his hands, etc. Then his motor ability began to decrease more and more until now he is unresponsive. He is on a respirator and a feeding tube, although he does initiate some breaths over the respirator. We thought he had probably had more strokes, but found out tonight that he hasn't had any more. The neurologist says it could be any number of things causing his unresponsiveness, such as infections that would only affect someone with a compromised immune system. The rheumatologist will be coming in the morning.
I read through the side effects of Rituximab again, and one thing on the list was progressive multifocal leukoencephalopathy (PML). Apparently it's a virus that attacks the white matter of the brain in immunocompromised people. I'm wondering if it's that. I read that the usual treatment (for someone with HIV, for example) is antiretroviral drugs, which would help bring the immune system back around to fight the virus causing the PML. I'm thinking that wouldn't work for someone being treated for Wegener's, though. We're going to mention this to the doctor tomorrow and see what he says.
Is there anything else you all can think of that we can ask the doctor about, or has anyone ever experienced this? It's been a very hard day for us and I'm tired, so I hope this message makes sense. Please pray for my dad and our family.
My dad has had all but the last Rituximab infusion. It was certainly hard on him each time (he suffered things like very low blood pressure and ended up hospitalized again). After the last infusion he had, we thought he was doing okay and we figured we'd do the last infusion in a week or so and were looking forward to seeing serious results. Four days after the infusion, the doctors pushed for him to be discharged and, as a compromise with my mother, moved him to a rehab floor instead the next morning. He was unhappy about not going straight home, but seemed to be doing okay until about lunchtime his first day in rehab. His blood pressure dropped, he was moved to critical care, and it started looking as though he'd had a stroke. Finally, it was confirmed that he'd had three strokes. Even after all that, he was still able to sort of talk, move his hands, etc. Then his motor ability began to decrease more and more until now he is unresponsive. He is on a respirator and a feeding tube, although he does initiate some breaths over the respirator. We thought he had probably had more strokes, but found out tonight that he hasn't had any more. The neurologist says it could be any number of things causing his unresponsiveness, such as infections that would only affect someone with a compromised immune system. The rheumatologist will be coming in the morning.
I read through the side effects of Rituximab again, and one thing on the list was progressive multifocal leukoencephalopathy (PML). Apparently it's a virus that attacks the white matter of the brain in immunocompromised people. I'm wondering if it's that. I read that the usual treatment (for someone with HIV, for example) is antiretroviral drugs, which would help bring the immune system back around to fight the virus causing the PML. I'm thinking that wouldn't work for someone being treated for Wegener's, though. We're going to mention this to the doctor tomorrow and see what he says.
Is there anything else you all can think of that we can ask the doctor about, or has anyone ever experienced this? It's been a very hard day for us and I'm tired, so I hope this message makes sense. Please pray for my dad and our family.