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 3. Not a good day.

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.

Grace knows I feel like I got hit by a truck.

 

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.

Why I’m Sticking to My Therapy

I’ve heard a lot of talk recently about the new oral therapy, Tecfidera, approved by the FDA last spring for multiple sclerosis. It’s the third oral drug aimed at treating my disease.

In one of the many articles announcing the news, the New York Times wrote: “While self-injected medicines like Avonex from Biogen and Copaxone from Teva that entered the market in the 1990s are still used by the majority of treated patients, newer oral drugs are making inroads. In addition to Tecfidera, the other two oral drugs are Gilenya from Novartis, approved in 2010, and Aubagio from Sanofi, approved in September.”

I’m still on my injection therapy, Copaxone, but I consider this new drug to be great progress for the MS world. I think back to 1994 when I was diagnosed; at the time there was only one therapy available. One! I was on Betaseron for over two years before switching to the new Avonex because a once-a-week injection sounded much more appealing than an every-other-day injection. But I suffered from horrible side effects while on both therapies. I felt like I had the flu 24/7, making it difficult to work full time and take care of my baby boy as a single mother.

When Copaxone hit the market in 1999, I was eager to try it. I’d done my research and knew the side-effect profile was much different from the therapies I’d been struggling with for five years. It is a daily injection, which I know a lot of people have a hard time with. But I decided that I would rather give myself a shot every day if it means my body will tolerate it without the miserable flu-like side effects. I’ve been taking my daily injection — or my daily dose of hope, as I like to call it — ever since.

I’m not symptom free, but I’ll be sticking (pun intended) to my injection therapy for now. The oral therapies are new and the proof that they work as well as injection drugs isn’t convincing enough for me. Not yet, anyway. I will admit that taking a pill once or twice a day sounds like a nice change from what I’ve been doing for more than 14 years. But as the saying goes, “if it’s not broken, don’t fix it.”

As an MS patient advocate, I have the opportunity to speak to many others who share my disease. A lot of these patients are newly diagnosed and have no idea which therapy is best for them; it’s always a personal decision for the patient to make with the guidance of his or her neurologist. I encourage everyone to be on some type of therapy, no matter how long they’ve had MS and even if they’re currently symptom free.

Why not do something to slow the disease down if you can? If one therapy isn’t working for you, try a different one. That’s what’s so nice about how far we’ve come in the past 20 years. Patients have a lot of choices now.

But we’re still not where we need to be because we don’t have a cure.

The FDA reminds us of this in its press release about the new drug Tecfidera: “No drug provides a cure for multiple sclerosis so it is important to have a variety of treatment options available for patients,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “Multiple sclerosis can impair movement, sensation, and thinking and have a profound impact on a person’s quality of life.”

So let’s stick with a therapy that works for us and do our best to stay healthy until we can get that cure.

My daily dose of hope… errr, I mean Copaxone.

My daily dose of hope…errr, I mean Copaxone.