Injections

I was anxious, but excited, to start the injections. I left work around lunchtime for injection training with a nurse. I drove to the doctor’s office, parked, checked in, and was called back quickly. She asked if I had the injection with me. Um…no. No one told me to bring them. I guess that seems obvious in retrospect, but it had not occurred to me that the instruction would include actually giving myself the shot. I had to go down to the pharmacy to get the medication, wait at least twenty minutes for the refrigerated medication to warm up, then come back to see the nurse. I was frustrated about the waiting, but grateful she was still going to see me that day.

I went to the pharmacy to get the medication. It came in a large box, full of thirty pre-filled syringes. I was also given a neon green soft-sided cooler from the drug company, full of instructions, gadgets, and swag. I took everything to my car and waited in the parking garage, listening to an audio book. After twenty minutes, I removed one syringe, put it in the cooler, and headed back up to see the nurse.

When I went back, the nurse had printed off the instructions for Glatopa. She discussed that it should be refrigerated, but taken out before injecting. She said that I needed to rotate injection sites to avoid dimpling in the skin. She suggested rotating in a circle around my stomach, a couple inches apart each time, avoiding the area around my belly button. She asked whether I wanted to use the autoinjector. One of the boxes in the cooler contained an autoinjector. She talked about how to assemble and use it; it sounded complicated and overwhelming. When I had watched YouTube videos about injections, I saw that some came in pens where you just had to push a button. It looked so easy, and less intimidating than a syringe. I had asked the MS specialist about it and she’d said that some people prefer to do the shots themselves so they can control the speed. Being in control sounded good to me. So, I decided to just use the syringe. Since then, many people have said they prefer the autoinjector, but I’m still too scared to try it.

She also talked about the possible side-effects. I’d talked about them before with the neurologist and the pharmacist, but now I was actually giving myself the shot, these potential side effects suddenly felt very real. The most common side-effect is injection site pain. I knew this and was not worried about it. I’ve had shots, bug bites. I could deal with a little pain or itching. The other main side-effect, which is less common, is feeling like you’re having a heart attack right after the injection. On the official list of side effects it is described as heart palpitations and flushing, but the medical professionals and several people in MS groups have said your heart races, your chest tightens, you get hot, and it is terrifying. Usually, it is harmless and only lasts 10-15 minutes, but in some cases, you may have to go to the ER. I’d read several people’s descriptions of their experiences, and it was very scary.

The nurse gave me a handful of individually wrapped alcohol wipes and Band-Aids. She told me to wash my hands, sterilize the area, check the syringe for color, grab a chunk of skin, and then quickly insert the needle perpendicular to my skin. Oh, we’re doing this? Right now? Okay. Deep breath. 1, 2, 3, go! I didn’t really feel the needle go in. Wow, I thought, that wasn’t a big deal. Easy, peasy. I can do this. But, then a minute later, it started to hurt. A lot. Is this normal?

The nurse asked how I was feeling. I told the her it hurt and she said that was normal because there was a lot of fluid that went into my body. I asked how long it would last and she said it could be a few minutes or an hour. I also felt hot and my heart was racing. Was I having a reaction or was this just my anxiety? The nurse could tell I was nervous and asked if I wanted to stay in the office for a little while to make sure I was okay. I knew I was probably just freaking myself out and needed to calm down, but just to be safe, I decided to sit in the waiting room. I took deep breaths and told myself to calm down. After a few minutes I felt fine, and went back to work.

The panicky feeling went away, but the injection site hurt for hours. I can’t remember when it stopped. It might have been the rest of the day. Some people say the pain is like a bee sting. I haven’t been stung since I was a child, but I think that is probably accurate. Let me just say, I’m not a baby. I have a decent pain tolerance. I’ve had a C-section and various injuries. Flu shots and vaccines are a minor irritation. It’s not the needle that hurts. It’s the medication in your body. The pain starts a few seconds to a minute after the injection and lasts for several hours. After the first injection, I decided I would only do them at bedtime so I could lay down and then go to bed after, rather than try to work through the pain. But, what else could I do?

I read more about Glatopa and asked questions in online forums. Several people suggested icing the area after. So, for the second shot, I used an ice pack. That helped, but it still hurt. Someone else suggested heat before. The next day I tried heat before and ice after. Better. I re-read the instructions and realized I was supposed to take the syringe out and then leave at room temperature for twenty minutes, not take it out for twenty minutes. I took a syringe out and checked it after twenty minutes; it was still cold to the touch. I researched online and read that some people took it out days before, although my neurologist had advised that while it was okay to leave it at room temperature for several days, that it was better to keep it refrigerated. I knew that injecting the medication cold made it more painful; that’s why they tell you to take it out before the injection. So, I started taking the syringe out at dinner time, giving it a few hours to warm up before my bedtime shot. That helped quite a bit. Occasionally, on a busy day, I forget to take it out early and think, oh shit! Should I skip a day, stay up late, or just deal with the pain? I always stay up late when that happens.

When I re-read the instructions, I also saw that the manufacturer said not just to rotate spots on your body, like the circle around my stomach I had been doing, but to rotate the parts of your body. I was supposed to do seven different locations for each week: the back of each arm, each thigh, each hip, and the stomach. So, I was only supposed to do the stomach once a week, not every day. I decided to start rotating locations. When I realized I was supposed to do different parts of my body, I started reading about what other people did. I read that some people preferred the hips or thighs. I thought, maybe that will hurt less. In my never-ending quest to find ways to make these shots more bearable, I’d read an article that recommended ice before, instead of heat. So, I decided to try ice before and a new location, my thigh. I iced my leg, grabbed a meaty part of my outer thigh, and, deep breath, poke. Holy shit! That hurt! It was the most painful shot I’ve done. It hurt while I was injecting the medication, and for hours after. The pain was so intense that for the next couple hours, every time I moved, I winced, and cursed. I had a large welt on my thigh for weeks after. I thought maybe it was the ice, so tried my thigh a couple other times, in different location. It always hurt, much worse than the stomach, and always left a welt. I tried my hip a couple times too, but it was hard to reach and hurt more than the stomach. I’ve never tried my arm. because I’m not sure how to inject the back of my own arm and I’m not asking my seven-year-old to help. Plus, there’s less flesh back there so I think it would hurt more. I’ve read it’s the most painful location. After the thigh, I’m not willing to risk it. So, I’ve decided to stick to the stomach.

In the first weeks, I had a couple gnarly bruises from injections that hit blood vessels. I had shots that bled. I had medication ooze back out of my skin. I’ve had welts, red spots splattered across my belly, and injection sites that itch for days. I’ve learned that the faster you stick yourself, the better, it’s better if you can keep the needle at 90 degree angle, and that you need to leave the needle in place after the injection to avoid medication leaking out. I’m not perfect, but I’ve learned from trial and error and developed a routine.

Every night, I take the syringe out at dinner time. I use a heating pad for about five minutes on the section of my stomach where I will be doing the injection. I get the supplies, go in the bathroom, wash my hands, prep the Band-Aid, sterilize my stomach, check the syringe, remove the cap, grab a chunk of skin and fat, poke myself, slowly push the liquid in, hold the need in place for at least five seconds, discard the needle in the sharps container, put the Band-Aid on, get an icepack, and lay on the couch with ice until I’m ready for bed. This process is at least an hour. Every time. And, every time, it hurts.

I also had massive anxiety every time I had to give myself a shot. I thought about it for hours leading up to the shot. How much is it going to hurt today? Will I have a reaction? What would I do if I had a bad reaction? I kept my phone nearby in case I needed to call 911. Should I teach my son how to call 911 on my cell phone?

After a month, I thought, “I have to do this every day? For…ever?” It felt impossible.

Thankfully, when I had my follow up with the MS specialist, she was able to switch me to three injections a week. So, now I have four nights off! I was so excited the first day I didn’t have to give myself an injection. What a relief. No planning, no pain, no worrying. But, the injections were twice as big. So, after my glorious day off, I was riddled with anxiety again. Is it going to hurt more? I was also really worried about a reaction. I’d read that reactions don’t usually happen the first month, and the nurse said they were most common after two months. Also, they were more common when taking the higher dose. I enjoyed my days off with a joyous calm, but my anxiety ballooned on the injection days. Then, I finally realized I was making myself crazy. I could not control whether or not I would have a reaction. It could happen today, or in a month, or in five years. Worrying would not prevent a reaction, but it was definitely making me miserable. So, I decided to just stop worrying. And, I did. Mostly. I still got anxious the first time I had to give myself an injection away from home, and I’m sure I’ll have plenty more firsts to worry about, but I do not drive myself crazy every night anymore. And, the shots hurt less. I don’t know if I’ve just gotten used to them, or I’ve built a tolerance, but they are not as painful as they were in the beginning.

The injections aren’t fun, but they’re tolerable. It’s just part of my life now. And, if it slows the progression of MS, it’s worth it. Unfortunately, the injections aren’t effective for at least six months. So, time will tell. In the meantime, medication is not the only way I’m fighting MS.