I had my full dose of Rituxan Friday evening. The weekend was fair. Yesterday, which was Sunday, I didn’t feel well but I think that was more steroid related. Today I woke up and I felt better. I find I fizzle faster. I have gone into bed before 9 both nights and slept well. Even waking up to use the bathroom has been minimal. I have worked out each day refusing to give in to the fatigue but I do…
I had my full dose infusion of Rituxan yesterday in my home. Definitely the way to have an infusion. Got my dogs with me for some puppy love, relaxing in my chair and catching up on DVR. The infusion was started very late which was a downside. My nurse had an issue with a prior patient and an infusion that was already scheduled late was now started at 6:30pm. Rituxan, like Ocrevus, is a 5-6 hour infusion so you could…
It was actually approved for my Rituxan infusion. I will be taking it like the Ocrevus and in a full dosage. I know that my doctor has lowered the amount of steroids I need to take prior to the infusion and I will be taking 250mg. Still a high dosage considering prednisone, the oral steroid pill most people take, is normally issued in a step down pack where the highest dosage is a 10mg pill 6 times a day. Just…
After I spent hours on the phone getting my van taken care of, they finally came to tow it to a place on Long Island instead of New Jersey. I was mentally exhausted. As I am coming back into my condo the phone is ringing. It was my infusion place. The authorization for Rituxan isn’t going to be overnight and my infusion scheduled for Wednesday was canceled. All I could do was laugh. One problem solved another one starts. This…
So my infusion is coming up and I’m waiting on authorization. I’m switching back to Rituxan hopefully because I personally feel slightly safer on the drug. However I can only imagine what this will do with the authorization of the drug. Ironically my last infusion my pharmacy had Rituxan on the approved list but not Ocrevus. It took my a while to get Ocrevus approved. Now that I’m switching again to a drug that is technically not approved for MS…
I am due in March for my full dose infusion of Ocrevus. A process that has never run smoothly and has caused a lot of aggravation. https://multipleexperiences.org/2018/09/13/no-ocrevus-infusion-today/ https://multipleexperiences.org/2018/09/21/no-ocrevus-infusion-yet/ Those blogs were only my issues with the last time I had the infusion. I had issues every time my infusion was scheduled. Now I’m going back to Rituxan at the full dosage. Rituxan which is technically not approved for MS but I’d prefer to be on for safety reasons. I’ve explained…
I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…
It’s was my routine checkup with my neurologist today. One month shy of my 21st anniversary of my multiple sclerosis diagnosis. This appointment was with the neurologist that made that diagnosis 21 years ago. He knows me well. My folder is very thick and over the years it has been thinned out and moved into storage. Every time I see my file it is a reminder how long my history with this disease has been. 21 years. I ignored it…
Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…
I have an appointment tomorrow morning in NYC with my MS specialist. I’m coming off a 3 day round of steroids to see if it was at all possible I could be having some type of relapse. I personally didn’t believe that’s what was happening, however I believe steroids can you give me a little bump up in the energy. My thought going into tomorrow is if I’m still deteriorating so much, why am I taking such a heavy duty…
