Checking in after Remicade infusion #2 and blood transfusion, panic attacks, insomnia, ramblings

Hi, all. Here are some updates and thoughts.
As a reminder, I was hospitalized for 8 nights early this month with severe flare/dehydration/anemia and was diagnosed with Cdiff.
Had FMT from my teen son while inpatient, and the next day had Remicade dose 1.
Have been trying to get over the extreme fatigue, brain fog, anxiety.
I have a Hawaiian vaca scheduled to begin two weeks from today. (praying it happens)
This past week, I received two units of packed red cells on Wed which brought my hemoglobin from 8 to 12. I almost can't believe the doc was just going to make me try to tough it out by supplementing iron. It would have taken months.
Thursday I received Remicade infusion number 2.
Through all of this, I have not slept more than two hours per night, for over a month. I have developed a very bad brain fog, and symptoms of panic attacks. My eyes even have trouble focusing. I talked to my GI about the possibility of this fog being related to Remicade, and he does not think so. So he agreed it must be exhaustion and anxiety. I have a prescription for Ativan, but it does not help me sleep for long. I took my first ever daytime dose of 0.5 mg this week because I felt so panicky I thought I would explode. It helped, for the most part. Nonetheless, GI would not prescribe something to help me sleep through the night (did not advise against it), so I went to primary care where I got a script for Ambien CR and last night I ACTUALLY SLEPT!!!

My problem at this moment is that I am noticing a continued insufficiency in my vision, as well as muscle weakness, most noticible in my legs and forearms. It's extremely difficult to climb stairs, and while at the drugstore yesterday I got down to the floor to pick up something I had dropped and only stood back up through an extreme effort. I am afraid this might be related to the Remicade. I guess I will have to consider whether or not to continue with it. I also have a script for Wellbutrin, which I use daily at 150 mg, also have 300mg available but cannot handle the brain zaps right now, and I know that's supposed to have some kind of anti-TNF activity, too. I'd really like to learn how to employ that.

I am really scared of the possibility of Remicade causing neuropathy. UGH.

Flare is better...just trying to ease back into a normalish diet. I really miss vegetables.

Yes, I am on 30 mg pred. Will drop to 20 on Monday. I did attempt to update my signature this morning, but apparently it did not take. Trying again.

Should say "40ish yo female, first flare 6 months after quitting smoking in 2009
Severe pancolitis, hospitalized Oct 2014 x 8 nights
Using Asacol, Remicade, 30mg Pred, Wellbutrin, probiotics, thyroid replacement.
In addition to UC, I have also been diagnosed with AI hypothyroid and celiac disease."

It's all pred stuff for sure it sounds like! Tapering down should help with a lot of these issues I would hope. Take it slow even though you want off. You want to keep the uc in check. I can't believe your gi didn't give you a sleep aid with the prednisone. I wouldn't sleep at all on prednisone without a pill. They should really warn you and prescribe something. Pred also makes me really mean and intolerant of people.

Looks like your signature updated. Sometimes there is a lapse between when you update and when it shows up.

Sorry to make your life even harder, but eye problems can be just one more gift from UC. Eye inflammations can be extra-intestinal manifestations of IBC, or can be related to steroid use.

UC - the gift that keeps on giving (sigh)

Pred does affect my vision badly at doses of about 20mg and above - and at 40mg I experience all the insomnia etc. so I hope it is that for you and it will resolve soon. A psychologist was saying to me recently that he recommends Wellbutrin when people have a depression with no energy so I imagine that mixed with pred could also up the agitation?

Also what you describe sounds like Pred withdrawal - the postural hypotension, not being able to climb stairs - maybe the tapering has been a bit fast for your adrenals?

I think you did right to get something to help you sleep. Hope you can keep getting some rest. When agitated on Pred I try to find a space where I can be calm and grab any nap that may come along as they are few and far between