This week I had the first of two Rituxan infusions. My last treatments were in Nov and Dec of 2013 and they tend to aim for every six months. I apparently have little recollection of the actual experience last time. By that I mean: I was feeling so bad MS wise at the time, that I associated most of the physical portion of that experience with my MS instead of the infusion itself. W suggested that I document it a bit better this time so I’d remember more going forward. Smart man. 🙂
On Wednesday morning we headed to the neuro clinic bright and early for a quick visit with the nurse practitioner. Rather than an actual medical visit, this is a pre-Rituxan visit and basically is to ensure that there are no concerns that should stop them from authorizing the infusion. We talked briefly about my recent GI problems and she decided that it was likely unrelated. We even discussed that if my CD19 & 20 counts stay at zero, we may be able to consider just one infusion every six months instead of a set of two going forward. She checked all my labs and took another urine sample just to be safe. She listened to my lungs, my heart, and felt all my lymph nodes for swelling. At the end it was decided that I was okay to proceed (yah!) and we headed out.
We arrived at the CMC Infusion Center a few minutes after my actual appointment time because of the neurology visit. They were gracious and just ushered me right in and gave me a big, comfy chair. Kathy, one of the amazing nurses there, came over and wrapped me in blankets and placed a heating pad over my arm. Not only does this feel lovely, but it helps them to get a good vein the first try. I tried to relax while I warmed. After a few minutes she returned and started the IV. She took vitals (my blood pressure was high, but it is always high when I go for an infusion), asked some medical questions, and we were off.
Before the Rituxan infusion, they give pre-meds. The goal is to head off any possible side effects. Each doctor/infusion center seems to have their own pre-med protocol, so yours may be slightly different than what I describe. We started with some fluids, and then she switched over to 100mg of hydrocortisone (solu cortef) which is used to reduce inflammation. Once it was started, Kathy popped out and allowed W to come back and sit with me. The whole pre-W experience was only about 30 minutes. The steroid takes about 30 minutes I believe. Things get a bit fuzzy here for me as the meds take over a bit. When the steroid is done, Kathy flushed the line and then gave me two tylenol to take (this reduces the likelihood of fever/chills and headache) and started the 50mg of IV benedryl (to reduce an allergic-type reaction). This burns a bit going in, but in spite of that, this is when I really float away. I am extra sensitive to Benedryl. On the rare occasion I have to take it, I take half of a pediatric dose if that gives you any idea. So, after the IV, I spend about an hour with my eyes closed. Not quite sleeping, but definitely not functional.
Kathy flushed the line again after the benedryl and then the Rituxan begins. This is administered very slowly to begin and then the infusion rate increases over time. Every 30 minutes, Kathy would visit to take my blood pressure and my temperature and ask if there is anything I needed. They are incredibly attentive and it is much appreciated since you are basically spending the day with them. We always bring our own snacks and drinks, but they do have a little snack area with sodas and crackers and will order lunch for anyone who is going to be in the infusion center during lunchtime.
When the Rituxan is done, they do a quick 3 minute flush, remove the IV, and we were ready to go. All told we were there 6 hours – much better than the 8.5 hours of my first infusion. A few related notes: although tired at the end, I was ready to be up and around. It’s hard to sit still that long regardless of how comfy the chair is. Second: Rituxan can drop your blood pressure. I came in very high mostly due to being nervous about the infusion (143/101 or so) and when I left I was 105/64.
W & I got in the car and headed home. We stopped on the way at a natural food store, the Organic Marketplace, that has a little cafe and ordered food to go for dinner. I decided to walk upstairs to the store and pick up a few things. Bad idea. The walk up two short flights of stairs left me hot, dizzy, and faint. I’m not sure if that was a blood pressure problem, or I was just way more tired than I expected.
When we got home I took a quick shower and asked W to stay in the bathroom with me just in case I got dizzy again. All was well. I put on PJs and crashed in front of the TV. We ate dinner, watched a few shows, and went to bed. At that point I was feeling fine, just tired like I’d had a very long day at work. The only thing I noticed was some residual soreness running from my arm where I IV was up into my shoulder.
I slept for 12 hours. Not typical for me. Lately I’ve been lucky to get 7 hours straight. I woke up feeling worn out and sore. I think those with MS will understand, but it just feels like I pushed myself a bit too hard yesterday and I’m out of spoons. My body is achy and it takes a ton of energy to do anything. My big goal is simply to get something small to eat so I can take my daily pills and then crawl back in bed or crash again on the couch. I’ll probably spend most of the day sleeping.
As a side note, all this excitement happened on my birthday. W was wonderful and ran out to pick up a special birthday lunch and some cupcakes so that we could celebrate in spite of the fact that I spent the day strapped to an IV pole.
So, although technically you are able to return to work the day after an infusion, for me that is just not the case. My body needs an extra day to rest before returning to normal life. This isn’t the case for everyone – in fact, based on feedback on the Rituxan facebook group, this varies pretty wildly. Some folks go right back to work whereas others feel a bit rough for a week or so. W tells me that I typically don’t start feeling like myself again until day three. I scoffed at him when he told me that last week, but my memory has been refreshed and I completely believe him now. I head back to the infusion center again in 15 days for the second in this set.
After all is said and done, I am still immensely grateful. Some folks give themselves injections daily. Others take pills that can have strange side effects. This med is only administered once every six months. Not only that, it is keeping my MS completely at bay and allowing my body the time to try to heal the damage that was previously done. Who can ask for more than that?
Update 6/11/14: I ended up taking an additional day off work that I didn’t plan (yep, W was right!). I had the infusion on Wednesday and wasn’t feeling like being up at all until Sunday, so it took me a full four days to get my energy back. Today is Wednesday one week later and I’ve felt great for several days other than a small amount of residual soreness through my shoulders and legs. I did notice that my MS symptoms have flared a bit in the week since the infusion and I had to increase my gabapentin dose again to compensate. Since I had previously weaned myself down to 300mg/day, increasing wasn’t a problem at all.