Moving on from Copaxone, Already!

As mentioned in my previous post, I am already stopping Copaxone. At the time I wrote my last post, I was thinking the only reason I would stop would be if it showed disease progression. I didn’t even think that an allergic reaction was a possibility since I had been on it before. I had just started back up on disease-modifying therapy, Copaxone, and after my fifth injection, I had a terrible allergic reaction. I usually get up an hour and a half or two hours before my kids wake up and I had been giving myself my medication an hour before they woke up. I give myself an injection and then sit and do my makeup with a warm compress over the injection site. About ten minutes after my injection on Wednesday morning, or about one eye into my makeup, I started to get these stabbing pains in my stomach. My initial reaction was thinking that maybe my period was starting, but quickly after that, my face went flush, one ear felt fuzzy, and I started feeling nauseous. I ran to the bathroom thinking I was going to puke. I also started to get chills and was trembling. I barely was able to get a text into Mitchell to ask him to come upstairs to be with me. I am so truly grateful that he was working downstairs and that he without hesitation came upstairs to see what was wrong. This awful feeling went on for about an hour. I was laying on the bathroom ground in agony. I kid you not I had two thoughts cross my mind, the first being if this doesn’t go away in the next 10-15 minutes I am calling an ambulance, and the second one was pleading with God to let the pain go away. God truly answered my prayers because in those next 15 minutes the intense stomach cramping was getting better and everything was calming down. 

I still felt weak and off so I asked Mitchell to wake the kids up. Poor Luke, was truly upset and nervous when Mitchell said that mom wasn’t feeling well and couldn’t come to wake him up. Mitchell had to bring him to me to show him that I was okay and I told him to come and give me a big hug. Mitchell helped get the kids ready and after a little bit, I knew that I could probably mosey out to the kitchen and feed them while he went back to work for a while. A few minutes into breakfast Luke decided he needed to go pee, so I took him, and when I glanced at my reflection in the mirror I was shocked that my face was covered in red spots all over. I quickly looked down at my chest and also noticed red spots. As I started uncovering areas of my body, I realized I was starting to get hives all over. I called my neurologist, but the neurologist and nurse were busy so I was supposed to get a callback. After waiting for an hour with no call, I called back (somehow my message was tossed to the side) and the nurse was panicked. At this point, the hives were starting to act up more. She knew that the neurologist was slammed and that it might take time to get some medication to me, but it was supposed to be early afternoon. However, at 1:30 I still wasn’t getting any word that I could get the medication and my hives were getting worse. I was still able to breathe fine, so that was good. I went to urgent care and soon after finally was able to get some steroids to help get things under control. However, it wasn’t until about 7 PM that they started calming down. Still there, but not as raised or itchy. And, even several days later, if I didn’t stay on top of the antihistamines and steroids I noticed the areas where I gave myself my 5 injections, kind of started getting irritated, inflamed, and itchy. 

It is safe to say that I will no longer be taking Copaxone in fear that the next time my throat could swell, close, or I could stop breathing. I will be starting to look into the next disease-modifying therapy to try soon. Thankfully there are a lot of options available. I will keep you all posted after I meet with my neurologist to discuss the next steps. 

Oh, and I have had many people concerned that this reaction was due to my first Covid vaccination. I mentioned this possibility to my neurologist and mentioned I have my second vaccination soon. He did not think that this was at all the cause of my allergic reaction. 

I appreciate any prayers sent my way that my brain will stay healthy and inactive while off medication and that I will respond well to whatever treatment plan is next.