Infusion Day 5
October 19, 2019
I made it! I am home after my last infusion day and I feel surprisingly good and not as wiped out as I have been at the end of the day. I assume it's some kind of euphoric relief that this part is over. I am really trying hard not to be too overly confident about not having any extra reactions to the medication. They really did pump me up with a TON of anti-histamines, antacid and steroids. I was reading today that just last year they presented 8 years of data from their very first trials. So the company has really had a lot of time to dial in a protocol to make medication reactions less frequent and severe. One of the blogs I read prior to deciding (and again today) was written by a 68-year old man who did his first round of Lemtrada in December 2016. He said the same thing that he was surprised how easily the week of infusions went and also the first month afterward but in the second month he was hit with a roller coaster of good days and bad days. He noted that he thinks he pushed himself a little too much right after when he was feeling good and that the 'good feeling' was probably mostly due to all the steroids. I know I definitely have that in me. I already have around-the-house projects in mind to do...so yes, I definitely have to be mindful of that. One of the tips the One-to-One nurse gave me was to not be inactive but to rest and not to wait until I am exhausted first. Another tip was to continue to drink lots of water. Not only because the medication can have an affect on your kidneys but also you are going to have cell die off and it's better to get all that flushed out instead of letting it settle into your system and cause discomfort. I am not a very good hydrator in general so that's another thing I will need to be mindful of.
I wouldn't have done this in the first place if I hadn't felt confident in the process. If you read all the warnings on the Lemtrada website or listen to the scary recording they play you on the phone, it makes you think twice. There is a lot of potential for a lot of serious things to go wrong. You are more susceptible to thyroid disease and melanoma which I've had one but they are also keeping a super close eye on you. I have to get monthly blood and urine analysis done for two years after my last infusion; that's four years total if I only do the two annual treatments. The drug manufacture has a set of tests they run for things that they know can commonly go wrong and since my doctor has been working with this drug for so long, he has his own protocol on top of that. He checks for additional items that he knows would be early warning signs for issues. He also tries to ensure your T & B cells come back at a similar pace. Apparently, there can be issues if they don't so if he sees that; he may give me a medication to knock one back a little. Plus there is a whole list of warning signs that I should be checking myself for daily. It gives me confidence that the drug has been in trials for so long and that it was FDA approved. It gives me even more confidence that my doctor has taken over 100 patients through this process without any serious side effects and that he has such a good handle on what the drug is capable of and how to make it more effective. Really, that is the big one. This is a serious drug and I would not want to be my doctor's first patient to take it.
To celebrate, I am in my room eating gluten free super hero chicken nuggets and crinkle cut fries. 🥳 My daughter is sniffle-y; I hope it's just allergies because she just got over a cold 3 weeks ago but I am not taking any chances. That's all I need in my first week. Plus my knees were feeling stiff and I wanted to put my feet up. There you go; I am in here blogging with my feet up and my gourmet dinner in bed and my family is in the living room watching Carrie. 😱 What are you going to do?
They did all go get flu shots today and brought me chicken and rice soup for lunch so I love them to pieces for that. It was very cute. The infusion center doesn't like to have family/friends come hang out because it's an open area and there is the chance to over hear medical information but they let them come back to bring me my lunch and they all flashed me their Walgreens band-aids on their shoulders. 😍
The day went really smoothly again. I did have to get another IV started since I decided to take out the second one yesterday. She ended up having to try twice because the first vein didn't want to cooperate but the vein she did get was a lot more comfortable so I am glad I did it. My poor left arm is a little bruised up but it will survive. The Pecid infusion and the steroid infusion went pretty quickly. Just when they were switching me over from the steroid to the Lemtrada, my head started feeling a little weird like I was a little light headed. I did mention it to the nurse because that is one thing they stress is not to ignore anything that might seem small because it could be the start of an allergic reaction but at this point I wasn't even on the Lemtrada yet so I thought maybe I was getting tired but again I wanted to mention it. I also thought maybe it was my blood pressure but that was fine; I got up to use the bathroom and it actually felt a little better. I just noticed it for a while; it didn't get worse and eventually did get better. I stayed awake for most of the day today. I reviewed my information about what to do and look for after the infusions. Tomorrow, I have to start my antibiotic. I also wrote an email that really should not have taken me that long but ended up taking me most of the day because I was getting up and down to use the bathroom every 30 minutes for a little while. After the Lemtrada was done, I did close my eyes and listened to an ebook for the last couple hours.
I was able to snag my back corner recliner again today which made me happy. It was definitely the best spot to be since I was there all day and had a bigger bag. My first infusion day, I had to be there at 8:30 but every other day I was there at 9:30. Today, when we walked in there were two other people in the waiting room. I sat down and started bouncing my knee in nervousness about getting my spot. When the nurse called me back only a few minutes later which actually felt like 10; I told her "I think the steroids are really getting to me because I was sitting there getting worked up about my spot." I was also freaking out a bit more about having any air in the IV line. I know a little is ok and it just dissolves in your blood but man that's a creepy feeling watching it move toward your vein. I couldn't help but feel like I was a little bit more of a pain in the ass today but they were all so nice there; I don't think they would have told me anyway and I am pretty sure they could appreciate how much steroid I was on. I tried really hard to be as friendly as possible. For the most part this week, I was pretty quiet.
I think I've gone on long enough for tonight and I am getting tired but one other thing I was thinking about today and noticed all week watching people come and go. Infusion medications are a huge business; I had no idea. That's all they do at that center. There are no cancer patients going there. I didn't talk to a lot of people but I did talk to two briefly and both had different autoimmune diseases and the treatment they were getting was for that. I knew that there were three different types of infusion medications for MS. One of them was taken off the market for a little while but I just didn't realize the extent of it. The only other time I was ever in an infusion center was for that steroid in 2013 and I was only there for a couple hours for 3 days, I didn't really pay attention to what other people were doing. I mentioned that I thought the Evoke Potential tests where a bit medieval feeling; this feels very futuristic to me. It just reminds me of medical scenes in space movies. Everyone hooked up to a bag of something....seems crazy but maybe that is my half cooked brain on steroids and antihistamines. 🙊
That's it for tonight...tomorrow starts Phase 3, I guess?
Phase I - Vaccines/Prep
Phase II - First Infusion
Phase III - Recovery part 1 (yep phase 3, it is)
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