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Tag: Tysabri

Do We Continue MS Disease Therapy Drugs?

Do We Continue MS Disease Therapy Drugs?

I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are the side effects, lowered immunity, and damage from the intense medication…

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My age 51 my body is much older

My age 51 my body is much older

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…

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Multiple sclerosis vs pneumonia

Multiple sclerosis vs pneumonia

I last took a Kesimpta shot on January 19. It is now the beginning of March. I had this dilemma of being behind my shot date in January. After Covid and a UTI that put me in the hospital the first time, I needed to be well before I took my shot. That ended up being about 6 weeks after the last shot Kesimpta dosage instruction is every 4 weeks. I’ve never not taken a disease modifying therapy from the…

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Kesimpta concerns

Kesimpta concerns

I wrote a whole blog on Wednesday but my site had issues and it never posted. To make it worse it didn’t even save anywhere. I spent 45 minutes writing and my words disappeared into a cyber black whole. It was very frustrating and I certainly didn’t want to rewrite another post. To be honest I don’t usually have a plan when I start writing. I might have an idea but normally I let the words take the direction. I…

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Valentine’s Day marks 23 years with multiple sclerosis

Valentine’s Day marks 23 years with multiple sclerosis

At the age of 49 I’ve lived almost half my life with the disease. It was the weekend of Valentine’s Day when I was moving into my new home that my left foot started to go numb. Within 4 days it was all the way up the entire side of my body. Within 6 days I was at a neurologist who was asking my mom and I if anyone in my family had MS. Having actually had optic neuritis about…

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Neurologist was as expected

Neurologist was as expected

My doctor appointment went as expected. I will be continuing on Rituxan for the foreseeable future. There really is nothing on the market for me to change to at this point. The question about me getting worse, isn’t really a question, it’s more of a fact. That is what secondary progressive MS is, it’s steady decline or worsening of symptoms. That is what I have and they are really no drugs for that, at least for me. Mayzent Is on…

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Multiple sclerosis relapses and disease modified therapies

Multiple sclerosis relapses and disease modified therapies

I was talking this morning to my step sister about MS attacks or relapses if you choose. We were talking about someone undiagnosed for years therefore not on any MS disease modification medicine. I told her how lucky I was that I was quickly diagnosed but more so that way back then there was ANY medicine for MS. I strongly believe that if I wasn’t on some kind of medicine I would have been completely disabled within a window of…

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Should I take Ocrevus?

Should I take Ocrevus?

If your doctor has suggested Ocrevus you are certainly moving up the ladder of disease modifying drugs for multiple sclerosis. With each of the IV drugs especially come side effect risks. Ocrevus is no exception. The most serious they show is: Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer. That’s a pretty serious risk to consider. They also talk about PML Progressive Multifocal Leukoencephalopathy. This is the brain infection caused…

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Ocrevus infusion a few months later

Ocrevus infusion a few months later

I’ve been asked this question quite a number of times so I thought I’d address this in my blog. I’m asked, do you feel any better since you’ve been on Ocrevus? Where I’d love to give a wonderful answer here, the answer is NO. however it’s also very important to answer, I also don’t feel worse. When I was on Tysabri, I was still feeling worse month to month. That’s why we made the switch originally to Rituxan, which is…

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My disabling MS attack in 2014

My disabling MS attack in 2014

It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I…

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