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Tag: Tysabri

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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Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

(CNN)In a rare move, the companies that make the multiple sclerosis drug daclizumab (brand name Zinbryta) have voluntarily pulled the medication from the market and stopped all clinical studies after reports of eight cases of serious brain inflammation among patients in Europe Read the full article here: https://www.cnn.com/2018/03/02/health/ms-drug-daclizumab-pulled-bn/index.html Each one of the drugs we take to keep as well, has side effects. You have to weigh the odds, the pros and cons of each of these medicines. I’ve been taking…

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Multiple sclerosis changed my life many times

Multiple sclerosis changed my life many times

This blog was inspired by another MS blogger, who like me, has had this disease along time. Her positive spirit is always an inspiration. https://trippingthroughtreacle.com/2017/11/28/accept-adapt-succeed/ It wasn’t one time, it’s been many times. The first was the day I got my diagnosis. I didn’t understand what MS was. There wasn’t an internet yet I could search. I had to look it up in an old set of encyclopedias that were in my home. It had maybe two paragraphs in the…

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Disease Modifying Therapies in MS, do you take them?

Disease Modifying Therapies in MS, do you take them?

I received a comment yesterday, on an older blog, about my Ocrevus infusion. What I found interesting is she’s had multiple sclerosis for 36 years and she’s first going on a disease modifying therapy. First of all I have to say, 36 years within any DMT, that is amazing!!! I know other people like that or that have stopped taking any of the disease modifying therapy drugs for a variety of reasons. I never had that option. My multiple sclerosis…

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My little French bulldog protector

My little French bulldog protector

I am finally feeling a little better. I got some Musinex yesterday which helped but the pounding in my head finally stopped too. I still don’t feel great but the fog that swept over my head and body has mostly lifted. I must again say with warning to anyone on an immunosuppressive drug be smart around others with any kind of sickness. I’ve was on Tysabri for almost two years and Rituxan for over a year and a half and…

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Ocrevus infusion not looking good for Monday due to insurance

Ocrevus infusion not looking good for Monday due to insurance

Can you sue an insurance company for stress? I know you can sue debt collectors if their actions cause undue stress. I was wondering about insurance. The stress that I’ve been under for this last week dealing with my insurance is ridiculous. Everyday I speak to them I get a different answer. Yesterday I was told they were waiting for clinical notes and a copy of my last MRI showings I have relapse remitting MS. I can understand if this…

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