I have had a helluva time getting my first infusion of Ocrevus instead of Rituxin. No, my doctor is not the problem. Indeed, she has been a champion. What happened? Well, I was initially scheduled to have the 2nd bit on December 21 in the afternoon. This means that I would have been in Penn Station, late on the Thursday night before Christmas. Everyone agreed this was a bad idea. I began to lose strength. I scheduled for January but it was just above zero degrees, not healthy or positive. I really began to weaken. We decided to try and find a local place to do the infusion only. This became problematic. I had to sort insurance out. The place we eventually chose wanted me to become their patient. I didn’t want to change my doctor. They started asking for all sorts of things. Every time we gave it to them and they wanted more. Despite having authorization, they told me I had no prescription. Then, they said Ocrevus had no idea who I was. Back to my original doctor and back to NYC. However, a combination of factors led to my being unable to walk for any distance with or without walker, no escalators. We determined we would need car service to get into and out of NYC. Why didn’t I just do this one way December 21? Hindsight is a great quarterback.
Now, every time I have been to the infusion center, I have been offered a wheelchair. Our plan this time was to take them up on the offer. Well, the best laid plans…. None were available. And we went up the elevator bank on the wrong side of the building. We discovered this when Reception had no record of my appointment. More gimping along. They did intercept me in the hall though and put me in my “room” straightaway. I was assigned my favorite nurse, Nicholas. He understands my phobia, terrors, and how my body works or doesn’t. I have really bad veins. Luckily, I saw the shooting heroin film in fifth grade and decided needles were not for me. I used to do alright with shots and blood until my college roomie said she always became faint. Not me, I was the big sister. Until my roommate opened her mouth. I cannot look or deal. My husband gives platelets on a regular basis. This is a several hour process. I had to use the restroom once and it was comic to see me try to walk and not look. After one of his operations, I nearly passed out when they tried to show me how to change his blood bag. Nicholas “gets” me. So, bad veins, infusion and Nicholas. I used to have a doctor who could find my one good vein. He died. For this treatment of several hours, they insert it in my hand. Nicholas knows where my vein is. Just typing this is making me lightheaded. Well, Nicholas missed. It wasn’t really a miss but a malfunction. He announced he had to go in again. At this point, I felt myself going out – cold sweat, hot, red faced, nauseous. The guys tell me no. Seriously? Deep breathing and ginger ale. He gets it in. Mind you, I keep my head averted the entire time, not just the sticking but the infusion. Nicholas is good so even when my blood pressure goes to 95 which is not bad for me, we keep on going. I did get the slight metallic taste with the steroids. It finished faster than the Rituxin. I was kept for an extra hour to make sure I was alright.
The car service both ways drove past the house I grew up in. I usually try to avoid it. After it was sold, it was completely altered. Driving back, I look carefully and see how the other houses have changed. I am amazed that I am still in contact with half of the people I grew up with on that block. It’s over 50 years. Many of their houses have also changed. Well, after all that time, of course, houses change. A couple of things. I grew up in Levittown where all the houses were supposed to look alike. They so did not. The basic floor plan was the same so when people asked where is your bathroom; same place as yours. What also strikes me is that I used to call it Leave It Town. Guess what? I am the one that stayed. I only live a few miles away. I only officially moved when I sold my mother’s house. My life has been so different than what I thought it would be.
My house was across from the parkway with its woods. I walked everywhere. I went to the wrong high school. It was almost 2 miles away. I used to walk back and forth several times a day. Now, I wall surf. I used to walk at night with my dad for hours on the curvy lanes. It’s too distressing.
The following day I didn’t wake up looking like a boiled lobster as I used to with the Rituxin. I was just a little thirsty without craving sweet things. And best of all, only half a pound weight gain. I gained 5 pounds overnight with the Rituxin. Shallow, I know.
I was like the energizer bunny the next day. For the first time in months, I was able to walk without holding on. Toddler steps but still big. Now, I had a slight bump after the Rituxin. My feeling was that I was not strong enough the last times to benefit from the infusions. So, this time I tired to do more exercise before the infusion. Physical therapy has been denied by my health insurance as not being medically necessary. I have not been physically strong enough to go to the gym . My instinct is that if I amp up the exercise, it will push the drug in my body. Just a thought. Two days later, as Tom and I are literally discussing this, Ocrevus called. Any questions? Yes, is what I am doing helping with making the drug stick? I spoke to three people and no answer! No one has asked this question? So, I am trying my hardest to power through the fatigue and minor pain to give my body a chance.
I appear to have had a minor bump up in stamina and walking. My therapist noticed and Tom continues to reinforce this.
My next one is next week. I wouldn’t say I am looking forward to it. I want it over and done with. I am pushing so that I will be able to take the train and hopefully the bus there and back. I am hoping for a bigger bounce from the 2nd go round.
And my “secret” weapon? I am going to try some mj after the Ocrevus. The more I learn about it, the more optimistic I am. I hear people are walking. That is my goal. What do you think? What has been your experience with Ocrevus?