Need help/advice: Dad sedated in the hospital on ventilator extremely agitated

**mrtmeo** · 01-28-2015, 04:13 PM

The benzo's, propofol and antipsychotic could be causing a reaction.
These drugs have to be tapered off very slowly.
The agitation could be due to steroid psychosis.
The morphine is an opiate and opiates suppress the respiratory system, not a good idea with poor lung function.

You can contact the Vasculitis Foundation for a local contact in FL
Contact Us

and there is a dr who's son was treated in (Pensacola) FL for MPA (Microscopic Polyangiitis) here
https://www.youtube.com/watch?v=zkxk...B2048&index=12

Was he tested for ANCA?
PR3 and C-ANCA is weg's
MPO and P-ANCA is MPA

**Rosebud1029** · 01-28-2015, 04:28 PM

Yeah I would not be surprised if any of these drugs are causing this I'm not sure if it would be a better idea to consider the Cleveland Clinic or if going to the specialized care unit and getting a vasculitis specialist there who is more involved, but they have to do more than they are doing to get him back to normal. I am not sure which ANCA it is. The doctor never confirmed which type it was. I will try to ask tomorrow. Thank you for the information. I contacted the Vasculitis Foundation and hopefully they will get back to me

**annekat** · 01-28-2015, 04:37 PM

Originally Posted by Rosebud1029

They started him off when he was still awake taking 5 pills of it daily, all at once, each 25 mg each. So that would actually total up to 125 mg, not 250 mg as I had posted earlier. To my knowledge, that is the dose he is still on, the 125 mg, but now through IV

125mg./day of CTX sounds like a low dose for the body weight of most men. That's the amount suggested for my weight at diagnosis, about 140-145lbs. if I remember right. When given by infusion, I've always had the impression it would be a much higher dose but not daily. I guess IV would be different; if for some reason it wasn't feasible for the patient to take the daily oral dose, it could be given by IV; I just don't remember hearing of it before.

It's great that he's doing better in some ways, his kidneys showing recovery, etc. You are right to want to get him to a vasculitis specialist. That would normally be a rheumatologist, but with kidney involvement, some people's primary WG doc is a nephrologist with vasculitis expertise. I would think having both, who could work together, would be the best. Getting him to the hospital that can wean him from the sedatives and ventilator sounds good, but ultimately he should be seen at a vasculitis treatment center like CC, and you are lucky to have that in Florida.

I haven't heard of CTX causing delirium or hallucinations, but don't know that it isn't possible. I have heard of prednisone, especially in very high doses like he was getting for a few days, causing psychotic-like effects. Is he still on prednisone? Even the typical high daily doses like 40-60mg, or any amount at all, can be very problematic for some people.... not necessarily delirium or hallucinations, but aggression and agitation. Others of us have a lot less problem with it.

**Rosebud1029** · 01-28-2015, 04:43 PM

He lost a lot of weight so he actually went down to about 148 pounds. They had to do all the medications through the IV after he was put on the ventilator. I believe he is on 40 mg right now (not 100% sure) I am four hours away at school, so I get most of the updates from my mom back at home. I am hoping that maybe getting him to this specialized care unit, getting a vasculitis specialist there, and then once he is off the sedation and vent going to the Cleveland Clinic. I am hoping that is the best option. I am not sure if the Cleveland Clinic has an inpatient specialized care unit for weaning off sedation/the ventilator. I tried looking it up, but it seemed like an outpatient rehabilitation. Not sure though

**renidrag** · 01-28-2015, 04:47 PM

Cleveland Clinic is where your Dad needs to be.
Dale

**annekat** · 01-28-2015, 04:59 PM

Originally Posted by Rosebud1029

He lost a lot of weight so he actually went down to about 148 pounds. They had to do all the medications through the IV after he was put on the ventilator. I believe he is on 40 mg right now (not 100% sure) I am four hours away at school, so I get most of the updates from my mom back at home. I am hoping that maybe getting him to this specialized care unit, getting a vasculitis specialist there, and then once he is off the sedation and vent going to the Cleveland Clinic. I am hoping that is the best option. I am not sure if the Cleveland Clinic has an inpatient specialized care unit for weaning off sedation/the ventilator. I tried looking it up, but it seemed like an outpatient rehabilitation. Not sure though

At 148 pounds, 125mg/day of CTX does sound about right. It cleared up my lung involvement fast and it sounds like it is already helping his kidneys. I would think a place like CC would have the ability to get him off the sedatives and ventilator, but I understand your concern about them possibly not having a specialized care unit for that. I do agree with Dale that he should get to the CC sooner rather than later. Hopefully, the first place would be able to get him off that stuff fast and he could then move on to where he needs to be.

**mrtmeo** · 01-28-2015, 04:59 PM

Originally Posted by Rosebud1029

Yeah I would not be surprised if any of these drugs are causing this I'm not sure if it would be a better idea to consider the Cleveland Clinic or if going to the specialized care unit and getting a vasculitis specialist there who is more involved, but they have to do more than they are doing to get him back to normal. I am not sure which ANCA it is. The doctor never confirmed which type it was. I will try to ask tomorrow. Thank you for the information. I contacted the Vasculitis Foundation and hopefully they will get back to me

They usually respond by the next day.
Also, they provide free consultation to physicians by vasculitis experts.
Look up steroid psychosis and see if it matches his symptoms.