One Monthly Lab Visit Down, 59 to Go!

It’s been four weeks since I started my Lemtrada treatment, which means today I went to the lab for the first of my monthly blood and urine tests. 

While I was peeing in a cup, I realized I should share a little of what I’ve gone through over the last month. The recovery was pretty tough at first, but I think I’ve turned the corner! Throughout the days and weeks I was overwhelmed with all of the love, support, and prayers I received on my Love My MS Life Facebook page. I’ll update here from time to time, but you can like/follow my Facebook page for more frequent updates.

The quick notes below were written on the days mentioned. For five consecutive days I spent 8-10 hours at an infusion center before returning home each night. I spent quite a bit of time over the last month journaling in great detail everything I experienced throughout – from physical side effects to mental fatigue to the emotional roller coaster ride. I’ll keep writing about my journey with the hope that all of my notes and experiences will help others in the future.

Day 1 has started. Pre-meds are done and the Lemtrada is flowing for four hours, then two hours observation. Slight headache and fever but happy to be on my way!

Day 2 is a wrap. It was a tough day defined by an overwhelming headache, but I’m holding on to hope! I’m on a gram of solumedrol (steroids) a day as part of the protocol to help with side effects, which explains why my face is so red, hot and flushed – by Friday I’ll look like a tomato.

Day 3 was a doozie! I didn’t sleep last night due to the side effects from the solumedrol. I went in exhausted and then my IV blew. I experienced tightness in my chest, especially when I tried to lay back. We tried Ativan to help ease my anxiety and help me sleep, but to no avail. I also developed thrush in my throat and mouth, which isn’t pleasant. Thankfully I’m getting IV hydration all day so it’s ok that I can’t eat. Hoping to take all measures to get some sleep tonight. I’d heard that it might get harder with each day, but my hopeful self was sad and weepy today. I’m sure it’s the combo of all the drugs – we really don’t know how the medication is affecting my body. I may be weak but I’m fighting.

Day 4 is done, which means my immune system is almost completely wiped out. Jake gave me a big smooch after he dropped me off this morning. It was honestly the best part of my long day. No sleep or appetite and the pain/tightness in my chest and upper stomach is still pretty uncomfortable. I have a prescription for the thrush in my mouth and throat. I’ve had steroids so many times over the years and don’t remember feeling this awful. Feeling my worst now – plan to take a bath, attempt some soup, take my medications and get ready for bed.

Day 5! It only took three attempts to find a good IV. My nurse is the best, she’s got a wonderful bedside manner. I’ve been blessed by so many angels this week. The pharmacist came out to talk about the chest pain I’m experiencing. She said to give it a week or so for all the medication to slowly get out of my system, but to keep in mind I’ll feel exhausted and possibly miserable for a while.

End of Day 5: My 5-day Lemtrada therapy is officially done! While I’m happy to be finished with that part of the process, the post-infusion phase is just beginning. I’ll be recovering over the next several weeks and dealing with a lot of side effects – some of which will worsen. As expected, my immune system is zapped, which means I can’t go out or have visitors. Fortunately, Jake just wrapped up his semester, so he’s around to help his mama out.

Week 2: It’s the week after my treatment and while I knew I wouldn’t feel great, it’s been tougher on me than I anticipated – both physically and emotionally. Lots of aches and pains along with very little energy and extreme fatigue. I have to avoid people and germs in general for quite a while. I also have to be careful with my diet since I’m at a higher risk for certain illnesses (listeria is a common one).

Week 3: I’m feeling better, but found out the hard way to not push myself. I might have gotten a little over eager about my minor improvement and spent a couple hours doing some laundry and cleaning a little. While I was happy to have the energy to be productive, I paid the price the next couple days. Even though the worst is over, I still need to remind myself to listen to my body and take it easy.

Week 4: This week I got a bladder infection (UTI), a result of my white blood count likely being low and not able to fight any type of infection. Some of you may know that bladder issues are nothing new to me. While this was definitely a setback, antibiotics are helping and overall I’m feeling more like myself every day.

Thanks to everyone, especially those that helped me get through this last month.

Love and hope,

Tricia