Dad is in a coma :-(

[jenjenn711]

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.

[gilders]

I'm so sorry to hear this and sorry that I don't have any really useful advice - I'm no expert in RTX side effects.
If your dad has PML then stopping the immuno-suppression maybe the only choice. I know from when I was first diagnosed it was always a balancing act with the immuno-suppression. I'd catch things like pneumonia and that had to be dealt with, with WG treatment being held back.
Therefore because your dad has WG, it doesn't necessarily mean other issues can't be treated (hope that makes sense).

[windchime]

I'm so sorry to hear about your Dad. I have no experience with that drug but is there a chance that he threw some clots that caused the stroke? Wegs people are more prone to clots. Sending good thoughts and prayers your way. Hoping for the best.

[Alysia]

Hi Jen,
my heart is going out to you and your family. I am sending you hugs and praying.
I don't know much but I think that PML is more slowly developed. try to mail the company of the drug to ask about more info.
I know some of the people here were in coma and get out of it and are now feeling ok.
please update us. we are all holding your hands and praying.

[annekat]

Jen, I'm praying for your dad and your family. I know nothing about RTX except that it can have bad side effects in some people, as can all our drugs. I hope he's being treated by WG specialists, and if not, that his docs will consult with some of them, for example those on this list: VF Medical Consultants . I wish I could be of more help and hope someone who knows more will jump in with suggestions of what to ask or say to the doctors. This sounds like a scary time, and I hope he will pull out of it, as others on here have.

[jola57]

Hi Jen,
i too don't know much about rtx but know that it can affect people differently. Please call the drug company's hotline about side effects. A big hug and keep us updated when you can.

[Debbie C]

Jen , I too am praying they find an answer as to what is going on with your father. Like Alysia said there have been several people on here that have gone into a coma and are doing fine now but I don't know if it was after an infusion. Sorry I have no answers, just prayers and hugs

[JeanMarie]

Jen. love & prayers for you & your family. I really can't add anything--it might not be related to the rituxan at all, might be the disease. I'm sorry I'm not any help.

[mishb]

Hi Jen,

I'm sorry that I haven't officially welcomed you yet - I'm catching up on a lot of threads now.

I'm sorry to hear about your dad and he will be in all of our thoughts and prayers.

You have received some interesting responses above, and I second that he needs to have a WG expert and also that it could be the disease not the RTX.

Take care or yourself and we await further news

[rebekah]

I'm so sorry to hear this. Your dad and your family will be in my prayers. Like others have already stated, I would see if a weg's expert can be contacted if he isn't seeing one already. Sending positive thoughts and big hugs your way.