I’m happy to say I’m all done with Ocrevus for six months. I just have to deal, of course, with the side effects from the steroids. I have to be honest too, these medicines and these infusions mess with my mood. I feel like I haven’t been my happy self in so long. I’m back to living in my four walls of a MS because I haven’t left my apartment. I’ve gone out for physical therapy and a couple errands…
I should be done. I should be done with the side effects from the steroids. I should be done with sitting there for 5+ hours. I should be done with the Benadryl. Yet I am not thanks to the infusion place ordering the wrong dosage amount last week. I once again have to go in today. I decided not to wait two weeks like when you first start Ocrevus because I just want to get it done. I once again…
When i’d have an MS relapse, I would take 1000 mg a day in an IV for four days. Then you would’ve taper off from that thousand milligrams to an 80 mg pill three times a day and continue down to a 60, 40, 20 etc.. To me, that taper, always still made me sick because going from that 1000mg to 80mg was such a huge jump. My body would always have the steroid withdrawal anyway so I stopped doing…
Leaving behind all the BS that got me to the second infusion, let me finally talk about the infusion itself. Unfortunately it wasn’t the full dose of 600 mg. This specialty pharmacy ordered 300 mg so in two weeks I’ll be back again to take the other half. This is the way you would start Ocrevus. The second infusion was supposed to be a full dose. However, the infusion is basically the same. After they find a good vein for…
Yesterday was a rough day. I was very uncomfortable and tired. It happens but the good news is I knew WHY it was happening. I slept a lot yesterday. I took a 2 hour nap on the couch with my fur babies on either side. Even with the nap I still went into bed at 9:30pm. I feel less fatigued today, I don’t feel that weight in my bones but my skin is still sensitive. I HATE steroids. This was…
I had to be honest and let others know in case it happens to you, I haven’t been feeling great since my Ocrevus infusion on Wednesday. I expected the day of the infusion to feel lethargic and tired because of the Benadryl coming through the IV, but I am still feeling that way. It is Friday morning and anyone with MS will understand me when I say my bones feel so heavy. My skin is super sensitive which is definitely…
The appointment was called for 11 but as I’m walking out my door, I received a call that they still didn’t have the pre-medicine orders from my doctor. After that call was made, yet again, they informed me I can come at 12:00. I got there and it just took time to get things rolling. Except for a TV and a comfy chair, it was an institutional type of room. However, the people were very nice. I knew exactly what…
My Ocrevus infusion is going to be on Monday August 14 now. Not the worst thing. My infusion for Rituxan was scheduled originally for July 17th so the change to the new drug set us back roughly a month. My neurologist told me that even though Rituxan is given on a six month schedule, the drug could last up to 9 months effectively. I feel fine and now I only have 5 days to receive an infusion so I am…
I worked out yesterday for the first time in a month. I was trying to really give my shoulder the time to heal, as recommended by my orthopedic doctor and my physical therapist. I’ve been suffering for almost a year now with tendonitis. My last appointment with the doctor was in early June and I received another cortisone shot. The shots definitely help but can only be given once every 3-4 months and even then is not a great solution….
I was diagnosed with MS in 1998. That was over 19 years ago. It’s 42.2% of my life. That’s a long time. There’s only one sure thing with a chronic disease, it holds true with any situation, the only part fully in your control is Your attitude Yes, you could eat right, take the medicine as directed, exercise, not smoke, and not do drugs, these are all wonderful things that may slow down a disease, but it won’t cure one….
