My IV immunoglobulin(IVIG) days 1, 2, 3

My Intravenous immunoglobulin (IVIG) experience days 1, 2, 3

Day 1

1^st, I should say that each person will have a different experience, but this is what happened to me. I am getting Intravenous immunoglobulin (IVIG) because I have an autoimmune encephalopathy — in my case we think it is Hashimoto’s Encephalopathy (HE) or steroid-responsive encephalopathy. I have been on intravenous methylprednisolone for nearly two years, but as time has gone by my symptoms have been getting worse, and it was finally decided to move me from methylprednisolone to IVIG.

I must say I was not prepared for what lay ahead when I walked into the infusion center. I had done a little reading on the treatment, but nowhere did I read that before they started the IVIG, first I had to have IV Benadryl.

It was explained to me that they would start the IVIG at a very slow rate of speed, then after half an hour increase the rate, and increase it again every half hour after that. I was also told to let them know if I started to get cold.

When they started the Benadryl (25 mg) it almost knocked me out, and I decided not to fight it and simply went to sleep. They woke me when they started the IVIG and when they changed the rates. I slept through the 1^st half hour and was awake for the 2^nd half-hour change; a few minutes into the 3^rd half hour, with the second rate increase, I started feeling cold. I need to be clear here: I am not talking a chill — I am talking arctic cold. I was shivering like crazy. I called the nurse and they stopped the IVIG and put a hot blanket on me, but that did not help much. They ended up wrapping me in three hot blankets and giving me another 25 mg of Benadryl. Also during this, my pulse and blood pressure first went up, and then my blood pressure dropped — I think at one point it was 103 over something.

By this time I was, as you can imagine, feeling just awful and decided to move from the chair into a bed (also, the Benadryl was knocking me out again). Once I was stabilized it was decided to continue the IVIG but at a lower rate (125 ml per hour). I then took a nap for about an hour.

When I woke up I felt awful — my head was stuffed, my brain was fogged, I was weak, and I did not feel well. So I just lay there until the treatment was over. Then I drove home.

At home I spent one of the worst nights of my life. I developed a sinus headache like you would not believe. If I was lying down, the pain on a scale from one to ten would go to an 8; sitting up it was a 3. I could not sleep through it even though I was exhausted. I spent some of the evening sleeping in a chair and some just walking around. I did not take any painkillers or decongestants because I did not want to do anything that would prevent them from giving me the IVIG the next day. That might sound crazy, but despite everything I had been through I still wanted to continue with the treatment — it may be bad, but it is better than the alternative. I mean, I do not want to be a blind, mentally retarded quadriplegic, and that is what I am heading towards. When you have what I have, your immune system misidentifies your nervous system as a problem and tries to destroy it.

About 4:30 the sinus pressure moved from the left side of my head to the right and decreased to the point that I could sleep.

Day 2

I started by trying to identify how I was doing in relationship to my HE. The 1^st thing I noticed was that for several months I had had tinnitus, but now it appears to be only in the left ear. That was a good sign. One of my most annoying symptoms is a facial twitch that has been happening every few minutes for about three months; sometimes it is a small thing in just the eyebrow, and sometimes my face curls into a snarl and I cannot control it. It is very annoying. Well, I noticed that while the twitch was not gone, it was now limited to the front of my nose. Also, I was much more confident walking than I had been in weeks. I still had the stuffed head, but I did not have a headache.

I just rested around my house until it was time to go to the hospital for the 2^nd treatment at 11:00. When I got there they reviewed my conditions and called my doctor to see if it was OK to proceed with the treatment even though I had the stuffed head. (A stuffed head can be a side effect of the treatment.) The doctor OK’d me to proceed.

I wish things on day one had been as easy as day two. They only upped my rate from a starting rate of 63 ml to 125 ml. It took over four hours to get the 500 ml into me, but I did not have any of the problems that I had the 1^st time. First, I knew better, so I started treatment in bed so I could sleep through the IV Benadryl. Then, when I woke up, we were running at 125 ml on the IVIG and my head was clear. Sorry to say, the tinnitus returned to the right ear — but you can’t have everything.

When the treatment was done I think I felt the best I had felt in months. While they were removing my IV I did notice that I was having some problems speaking (slurred speech), but that is nothing new and only lasts a short time.

At home I had some dinner and went to bed.

Day 3

Today I did not have any treatment planned. I am supposed to receive three treatments in a row, but this is a holiday weekend and they do not do the treatments on the weekends. So I will not have a treatment until Tuesday. I got up feeling better and more human than I have felt in at least eight months. The treatment seemed to be working. I still had tinnitus in both ears, but my overall energy was way up; my balance was up; I just felt better. I only wish it had lasted.

I get up each day at the same time — 4:20 — and today was no exception. I went through my morning routine and then worked on my bills. By 9:00 I noticed that I was very tired and needed to go back to bed. I was disappointed by this but not surprised — I have been through a lot lately. I went back to bed for a few hours. When I got up I felt just awful. My energy was way down, I could not focus, my brain was fogged, and I was having problems walking — worse than I was when I started treatment. I spent the rest of the day resting and did not even have the energy to make myself a frozen dinner, so I had pizza delivered. It was awful (both the experience and the pizza).

Below you will find a list of symptoms that I have reported to my doctors. This is the baseline I am going to use to see how I am doing.

Before Treatment	05/28/11
I have very little energy and cannot do the activities of daily living like I used to. Every day I feel ill.	In the morning I felt great; this afternoon I can’t even cook.
Brain fog where I simply cannot think.	Having problems making decisions; very fogged.
Several times a month I seem to relapse as far as my facial paralysis is concerned; it only lasts a few hours.	I think I have more control of my face at the moment.
My fine motor coordination seems to be getting worse.	About the same.
My speech problems also seem to be getting worse. I find myself stuttering quite a lot (getting stuck trying to say a word and not able to move on until I do) or slurring my speech like I had had Novocain.	Very hoarse today and some slurring.
I am having problems concentrating.	A little worse.
About once a day my right shoulder jerks.	I had 3 arm jerks.
I often have waves of numbness in my scalp.	About the same.
I have to leave work early at least once a week because I feel so bad.	If I had been at work I would have had to leave.
The ringing in my ears (both, but left worse) is there all the time and sometimes it beats to the rhythm of my heart; other times it is simply a squeal in the background.	I think the right ear may be turning on and off at times.
Sometimes I have double vision, but often I have problems focusing.	I was having focusing problems.
I am having facial tremors hourly.	Much less frequent; about the same area of face, much smaller — limited to tip of nose.
I often notice that it takes an effort to breathe, like something is weighing down my lungs.	Very difficult breathing.
My eyes are sensitive to light.	Same.
My tongue on the left side seems to have lost its ability to sense pain.	Same.
Lips were dry and bleeding.	Same.
I often feel weak on the right side.	Same.
I often have problems walking with my right foot turning out.	Same.
Even on good days I feel like my right foot is not lifting correctly, and I am subject to blisters on the ball of my foot near the big toe.	Same.

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