Infusion Day 2

October 16, 2019

Infusion Day 2

Previously...on Amy's Lemtrada infusion...  

I had to throw that in there so everyone knows I know the difference between pervious and previous.

My husband has pointed out a few typos.  Sorry about that.

Just quickly: the morning routine at home was the same.  I took my thyroid pill; ate breakfast; did some easy yoga stretches and breathing (I wasn't having any issues with the IV they left in but I didn't want to put any pressure on that arm either).  Before we left I took: Ranitidine (antacid) , Hydroxyzine (allergy med) and Cetirizine (allergy med).

Overall, I am feeling good.  I didn't have any allergic reactions to the infusion yesterday.  However, I have full blown insomnia 😟, side effect of the steroids.  I was on steroid pills for the 7 days prior.  I was having some sleeping issues but now it's been two nights in a row with less than 3 hours of sleep each.  I emailed my Neurology PA to see what I can do.  I'll be on this steroid all 5 days.

Oh, and I've changed my opinion of using steroids for an energy boost.  By Saturday I was retaining so much water, I looked four months pregnant! Not worth the trade off.  😉

Going into this process,  I was expecting an allergic reaction at the infusion site (itching/rash) and to feel like I have the flu the following week as those seemed to be the most common issues other people experienced.  All the medications you are given with the Lemtrada seem to be geared toward lessening those reactions.  Everything they give you is to lower your body inflammation.  I am trying to help that process by keeping my inflammation low with yoga and eating.  I am purposely picturing the medicine calming my body down and healing it instead of fighting against it or killing off cells (which it is actually doing).  Eating at the moment is hard anyway.  Since my immune system is going offline I need to be extra careful about Listeria and other bacteria in foods.  I can't just get a deli sandwich. Things need to be cooked well.  Eating takes planning/thought and I am trying to stay away from inflammatory foods such as gluten and dairy which I know inflame my system.  The grilled cheese I had yesterday was gluten free and vegan. 😋 I usually drink green juice to help with  inflammation but for now it'll have to be the grocery store pasteurized versions.  I can't have smoothies or raw juices unless I make them at home and I know that everything has been fully washed.  It's not worth the risk.  That is my goal/mission: keep my body calm so the medication can do its job as easily as possible and hopefully I can lessen the reactions and "fight".

Each of the five days at the infusion center will be the same.  When I arrive they give me Benadryl and Ibuprofen in pill form.  Then I get one infusion bag of Pepcid and one infusion bag of steroid (Solu-Medrol 1g). After that they start the Lemtrada with a bag of saline to dilute it.  All of that takes about 5.5 hours.  Then they observe you for 2 hours.  The first hour you get another saline bag and the second you just sit and relax.  

Currently, I am sitting through my last saline bag and should be leaving in about an hour.  I was able to use the same IV as yesterday with no problem.  I am going to have them take it out though so I can take a full shower and sleep without worrying about it.  My doctor recommend taking 10mg of Melatonin about 3 hours before I go to bed which will basically be as soon as I get home. 

Also, my IV is feeling a little tender and pinch-y.  Not bad but once in a while it feels like I can feel the medicine; that probably doesn't really make sense but it's definitely getting sensitive.

It was recommended to me to drink lots of fluids.  I don't remember how much exactly but between water and juice I drank about 54 ounces so far today. Plus the saline solution so there are quite a few trips to the bathroom and it's kind of a pain wheeling your IV stand around people.  It does get busy in here in the late morning/early afternoon.  Right now I am closing the place down though. 🥳  

A couple other observations from today.  I was running a little hot all day which is a side effect of the steroids.  In general, I tend to be cold and I have low blood pressure.  I never remember the bottom number but my top number typically runs from 95-102 and can go as low as 90.  Today, my upper number was in the range of 105-115.  This is still really low but just a little elevated for me.  My skin also has more color than normal. Temporary bonus.

 Oh, the younger man that I noticed yesterday.  He was here when I first arrived and my husband got him to talk a bit.  Unfortunately, he was having some type reaction so he left for some testing.  Obviously, I have no idea what other issues he had but I felt bad for him.  I asked my nurse about how many Lemtrada patients they see because I was under the impression it was rare and insurance didn't approve it that often but apparently they have been seeing it more often.  The in-take nurse also mentioned it was just approved by the FDA two years ago so apparently it's been under development for a long time because I know it's been around for 10.  The recent approval is probably making it more frequent as well.

Well, I am almost done here.  Two days down and three to go.

Update: 8:00 pm - When I got home this evening I noticed my knees are pretty stiff and my legs look like they are retaining water particularly around my knees.  Both things seem reasonable to me since I just spent two days in a recliner all day and I've had a lot of fluids but I did leave an after hours message for a One-to-One Nurse just to confirm.