It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…
My infusion scheduled for March 17. I’ve been on many of the disease modifying MS drugs over my 23 year span with the disease. Betaseron still holds the record of 12 years but that also has to do with the drugs that were available when I first got diagnosed. I have been on either Rituxan or Ocrevus since 2016. I group these two drugs together for very specific reasons, they are fundamentally the same. The biggest difference is Rituxan is…
I never watch TV through my TV carrier. I always watch through my Firecube. No matter what it is, unless it’s something that I record, I’m never on my TV. That being said, it’s also very rare I see commercials. However I was catching up on old Bravo shows that I neither recorded or watched while they aired. On the Bravo app, there’s commercials. When you’re watching an entire season of some thing you end up watching a lot of…
Good morning and happy hump day to all. Got through the day of exhaustion from therapy yesterday. At least I had a justifiable reason for being fatigued. I even made it to my hair appointment and no more grey hairs, at least for the next 5-6 weeks. My wonderful hair dresser, who is also a good friend, even blew out my hair for me saving me a step so I didn’t have to deal with it myself. I’m almost due…
Something happened after my Rituxan infusion and whatever it is, it is still happening. https://multipleexperiences.org/2019/09/18/allergic-reaction-to-rituxan/. I’ve continued to get these blisters under my breast since my infusion. https://multipleexperiences.org/2019/09/17/blisters-on-breast/ Each one has left a scar so you can count how many there have been on each side. I’ve changed my bras, changed laundry detergent, even try to go bra less white home, they still come. The good news is I am seeing a dermatologist on Thursday as well as my MS…
My next infusion is supposed to be in a few weeks for the full dosage of Rituxan. I called the infusion place that does the schedule for my medicine yesterday hoping to get a jump on things and avoid any issues. This time, for the first time, there shouldn’t be any problems. I haven’t had any insurance changes, Rituxan has already been approved from the last time and I’ve been getting my infusion with this place for a few years…
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…
