It’s Treatment Time!!!

For those who may not know this about me by now, I have had relapsing multiple sclerosis (MS) for over 12 years now. My actual diagnosis wasn’t until early 2013, but I was unknowingly showing symptoms a couple of years prior to that (more background information can be found here). With that being said, I’ve been on two different treatments for my condition.

The first drug I was prescribed by my neurologist was called Rebif. Rebif is one of the longest-standing treatment options on the market for relapsing MS, and it has a proven track record. It is a self-administered injection, via an auto-injector, taken three times per week. The injection goes into any number of fatty tissue locations on the body, most commonly the back of the arm (triceps area), buttocks, abdominal region or thigh. The use of an auto-injector means that treatment can be done at home by the patient without the need for constant doctor visits or supervision.

Upon my initial prescribing of Rebif, I was provided with the generic boilerplate information packet from the drug’s manufacturer stating the basic information about Rebif (what is does, it’s track record, side effects, etc.). The most common side effect of taking Rebif is flu-like symptoms. To alleviate the side effects, I could simply take an Ibuprofen (Advil) prior to the injection. A long term side effect of this drug was the possibility of liver damage so I would have to have regular blood tests done to check my liver function.

Armed with all of the information, an appointment was made for me with a home nurse to instruct me on how to properly use the auto-injector and administer the drug. It was a pretty simple process, and I’m not adverse to needles, so I didn’t figure on having any problems with the injections (or so I thought). I had a bunch of questions for the nurse and she was more than helpful in answering them.

Let the Treatment Begin
I was initially shipped a “starter” treatment of Rebif which lasted a week. This was to gradually introduce the drug to my system before getting the full doses for all subsequent injections. I never had to go to any pharmacies to pick up the syringes. It was all mailed to me at the house and all I had to do was put it in the refrigerator.

A typical injection was a bit of a staged production. First, it was recommended to take a syringe out of the refrigerator and let it come to room temperature first. This could help prevent any injection site reactions or pain. This would normally take 30-45 minutes or so. Once that was done, I needed to insert the syringe into the auto-injector. Next, I need to prep the injection site with an alcohol wipe. Finally, I could pull the cover off of the auto-injector, which removed the needle sheath, place the base of the injector on my chosen fatty-tissue location, and press a button. The spring-loaded mechanism would shoot the needle into the skin and inject the contents of the syringe. After waiting a few seconds to ensure the entire dose was administered, I could then remove the syringe from the auto-injector, carefully replace the sheath on the needle and place the used needle into a sharps container for proper disposal.

While getting the starter injections, I wasn’t bothering to take any Ibuprofen so that I could actually get a feel for what side effects I was going to experience. I wasn’t really feeling anything, so I was optimistic that maybe I wouldn’t feel the typical side effects. Once I started to get the full dose of Rebif, this quickly changed.

After my first couple of doses, I was definitely starting to feel the aches and pains associated with the flu. I took an Ibuprofen and finally, after a couple of hours, I was getting some relief. I was hoping that these side effects would gradually subside over time because if they didn’t, this was going to get old really fast.

Given all of the theatrics associated with getting each shot, this really put a damper on any plans Lisa and I had in mind. We had to plan everything around each injection. Another recommendation from the manufacturer was to try and take the injections around the same time of day each time. Again, this was beginning to get old really fast. I felt like this drug was running my life at this point.

This Isn’t Working Out
A few months into the treatment, I was beginning to have problems giving myself the injections. A lot of the time when I would hit the button on the auto-injector, and the needle went in, I would feel a tiny bit of pain. With each injection it was getting harder and harder for me to hit that button because of the association I made...click equals pain. Finally, I came out of the bathroom and told Lisa that I couldn’t give myself the injections anymore. I needed her to do the dirty work for me. I refreshed her on what to do and she took over these duties from that point forward.

Fast forward to about nine or ten months after being prescribed Rebif. There were a lot of things going on in the house at that time (check out “Nowhere to Go But Up (Maybe)” in How Did I Get Here?), and I was starting to feel the onset of another relapse. Lisa called the neurologist and he told me to stop taking the Rebif. It clearly wasn’t doing a good enough job and I needed to be put on something stronger.

A wave of relief hit me when the doctor took me off of Rebif. I was really getting fed up with all of the time and effort that went into each shot, and the side effects that came along with it. I was still experiencing the flu-like symptoms throughout the entirety of my time taking this drug. Not to mention, I still hadn’t recovered fully from my previous relapse which led to my initial diagnosis.

After a couple of months, we got together with my neurologist and he recommended a stronger treatment option in the form of a drug called Tysabri. Unlike the three-times-a-week subcutaneous injections with Rebif, Tysabri was an infusion that was administered once every 28 days. The best part was that the chances for side effects were next to none. I was sold on that idea immediately. Because of the nature of the treatment, this was not going to be a home-administered drug. I would have to go to an authorized infusion center for each treatment. This simply meant that I would need to go to a cancer treatment center.

Oh What a Feeling
Once we got all of the paperwork completed for my transition to Tysabri, it was time for my first treatment. This would be the first time I would be “plugged” into an IV since I had a stomach bug at my first duty station in the Air Force, and that was probably a good 14 or 15 years prior.

The first thing that needed to be done was to get some basic lab work done prior to getting the infusion. My kidney function had to be checked and okayed before I could be given my first treatment. This was simple enough to do and went off without a hitch. The veins in my arms, especially at the inner elbow were very easy to find. The nurse who took the blood was so good that I barely felt the needle go in at all.

Once the labs checked out, it was time to head back to the treatment room to begin my infusion. First, the nurse needs to check my vitals (temperature, blood pressure and oxygen saturation). Now that those were out of the way, it was time to find a vein for the infusion. This would be important because this wasn’t like just taking some blood. They wanted to make sure that I had some freedom of movement should I want to move around a bit or use the restroom. The infusion itself was going to take place over an hour. Once that was over, I still had another hour for observation to make sure I didn’t have any adverse reactions. If the infusion site was my elbow, I wouldn’t be able to bend my arm at all. This would be extremely uncomfortable for two hours. Not to mention, if I needed to use the restroom at any time, it would make that difficult as well.

Stick Me, Mick (That was a longshot of a “Rocky” reference, in case you missed it)
The nurse that was taking care of me suggested that the best place to try would be on the lower arm, between the wrist and the elbow. Because I already had a blood draw done on my left arm, the infusion would have to be on my right arm. The nurse tightened the tourniquet just above my elbow and began searching for a vein...not looking good. Because it was so cold in the treatment room, she decided to apply a hot pack to my arm with hopes that would increase the blood flow and make a vein more visible. Yeah, that didn’t really work either. She was left with one final location to try, and that was the back of my hand. There were no issues finding that vein, but when she put that needle in my hand, it hurt so much she might as well have used a garden hose. My hands are small and there’s not exactly a lot of meat there. I later found out that I was probably a little dehydrated which would cause the veins in my arm to not pop like they would if I’d been properly hydrated. Good thing to know for the next visit.

Once the IV was in my hand, I was started on a saline drip until the drug was mixed in the in-house pharmacy. I rolled the IV stand over to one of the treatment chairs and sat back and put my feet up. The chairs were pretty comfortable, so that was nice. Given that there are many cancer patients that have to sit for hours on end for some of their treatments, the treatment center tries to make everyone as comfortable as they can.

It only took a couple of minutes for the drug to be mixed and the nurse came over to get me started. After verifying my name and date of birth, she stopped the saline and got me going on the Tysabri. I sat in the chair for my hour without any problems. I made sure to bring a crossword puzzle book with me to pass the time. A nurse would check on me periodically to make sure I was doing alright or if I needed a blanket (it really is SO cold in that room). Even nurses that weren’t assigned to me checked on me.

I finished off the Tysabri bag and the nurse came by and got me back onto the saline for the remainder of my observation time. By the time I was halfway through with my treatment, I was really getting the urge to go to the bathroom (all that saline will do that to ya), so I unplugged the IV pump and wheeled it over with me to the bathroom. The IV pump has a battery backup so there’s no need to stop the treatment for any bathroom breaks. Oh what a relief that was. I was going to try and hold it until right before I left the treatment center, but that wasn’t going to happen.

My one hour observation was just about up, so my nurse came by to stop the saline and remove my IV. When she took that needle out, oh man, that was a load off my hand. It’s a good thing I had the infusion in my right hand because there was no way I was going to be able to write in my crossword puzzle book with an IV in my left hand. She wrapped a piece of gauze with some latex wrap and it was off to scheduling. I was scheduled out for the next five treatments, with the fifth one being a visit to the doctor assigned to me at the treatment center. Labs would be done prior to each infusion.

Success (With a Caveat)
All in all, the whole experience was quite good. Everyone taking care of me at the treatment center was awesome. By the time we had finished with everything, it was well after lunchtime, so we headed over to Chick-Fil-A to grab something to eat. That would be my “reward” after nearly every subsequent infusion***.

After getting home, I was a little tired, but I think that was just from the first time going through this whole infusion process. I wasn’t feeling any other side effects from the Tysabri treatment, so that was a HUGE relief. I went about the rest of my day and felt fine.

Fast forward a few months and my body had finally fully recovered from my previous relapses and I was starting to feel like myself again. The Tysabri treatments were so much better than Rebif. It was basically once a month for only a couple of hours and I felt no different coming out than when I went in. Given all of the negatives I experienced with Rebif, and the way I was reacting to Tysabri, my neurologist was tickled pink with my progress.

I do have to mention one particular possible side effect when it comes to Tysabri, and it is very important. Because of information discovered during the testing phases of the drug, if someone was on Tysabri and they had contracted the John Cunningham virus or JCV there was the possibility that the patient could develop progressive multifocal leukoencephalopathy or PML. This can be a disabling and often fatal disease. A large percentage of the world population has JCV and may not even realize it as it is unlikely to affect them. However, for people with MS that are taking Tysabri, the risk of getting PML is much greater.

With that being said, it is of the upmost importance that I get tested for the presence of JCV antibodies on a regular basis. There are levels that are deemed safe, and so far, I am within those levels. This means that my chances of developing PML are quite low. However, should my JCV antibodies spike for any reason, my doctor will take me off of Tysabri immediately as my chances of developing PML will be much greater. If this should ever happen, I would have to pursue another form of treatment immediately. Let’s hope that this does not happen, at least not any time soon.

A “Normal” Life
I have been on Tysabri for over nine years now. I have not experienced any side effects from the infusions in all of that time. I’ve learned to make sure I drink plenty of water the day before my treatment so that I don’t make the nurses work too hard in finding a good vein. I’ve only had one other instance where an IV was placed in my hand, and it was short-lived. I had a vasovagal reaction to the IV (probably from looking at the needle going in for the first and ONLY time in my life). I was getting blurred vision and I was feeling light-headed and nauseous. The nurse quickly removed the IV from my hand and found another location. I was fine once the needle was out of my hand.

I’ve stopped staying for the one hour observation period after my infusions are finished. Given that I have not had any adverse reactions in over six years, I’m not likely going to have one at all. In addition, given the COVID-19 pandemic that’s still going on as of the time this article was written (August 2020), I don’t want to be in the treatment center any longer than necessary. Even after the pandemic subsides and things go back to “normal”, I likely won’t continue the observation period as it’s not necessary and makes space in the treatment room for other patients.

In the grand scheme of things, I can’t really complain a whole lot. My condition has been, for all intents and purposes, dormant for the past nine-plus years. Most of the time, I don’t even think about the fact that I have MS. I’m fortunate that it was discovered in time and treated quickly enough that my body was able to bounce back and recover. I can’t say enough how much I appreciate all of the doctors, and especially the nurses, who’ve helped me over the past few years, some of whom have been seeing me since day one. I wouldn’t be in my current state of health without their great work and support.

***UPDATE, April 2023*** This year marked the nine-year mark of being on Tysabri, and I’m pleased to announce that I’m still in very good health. My JCV numbers have either been NEGATIVE or the extreme low end of INDETERMINATE with an ultimate result of NEGATIVE. Because of this, my neurologist is keeping me on this current form of treatment.

I have learned the hard way that I ABSOLUTELY have to have one to two bottles of water the day before my infusion, specifically an electrolyte solution. I’ve found that the small packets of Propel taste quite good, and seem to provide the best results for me. On the couple of occasions I did not have the Propel, the nurses always seemed to have a hard time finding a good vein. I think my record for sticks in one session was six. After that, I made sure to drink the necessary fluids.

Because I’m not doing the one-hour observation any longer, coupled with the early times for my appointments, we don’t really go to Chick-Fil-A for lunch after my infusions anymore. While, yes, we could venture back into town for lunch, lately we’ve decided to go to a local burger joint called Paige’s Root Beer instead. They have some of the best tasting burgers anywhere, and, coupled with a chocolate milkshake, makes for a nice treat for completing my treatment.

Sometimes it’s the little things that make all the difference :)