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Tag: gilenya

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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Scared for my Rituxan Infusion

Scared for my Rituxan Infusion

My big box from the pharmacy was delivered yesterday. In it was 250mg Solumedrol, 600mg of Rituxan, and a whole bunch of syringes and needles. I’ve done these infusion for years now. I’ve done Solumedrol infusion for even longer. This time opening the box made my stomach drop. I’m dreading this infusion. I’ve done it so many times yet this time I really don’t want to do it. I’m a little afraid. Years ago I was coming off of a…

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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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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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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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Ocrevus infusion still not approved, I kid you not…

Ocrevus infusion still not approved, I kid you not…

You can’t make this sh@t up. I get a call from the girl working on my infusion authorization, my insurance company wants to know the name, address and telephone number of my pharmacy where I am currently getting my prescriptions. The girl who called me really tried to be professional as possible but had the same reaction I had which was… WTF???? Will you be sending Ocrevus to my local CVS for me to pick up and take to NYC…

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Multiple sclerosis past, present and future

Multiple sclerosis past, present and future

I’m a very big fan of Flipboard . I use it a lot,  I post my blog, I read articles and I find recipes. I save all my recipes in a magazine, you could click on my recipe magazine right down the side of this blog. Yesterday I came across a great article about The Story of Multiple Sclerosis and It’s Major Milestones http://flip.it/udMksk. I just want to highlight the milestones. 1824 1st clinical description of multiple sclerosis 1868 Multiple sclerosis…

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The multiple sclerosis attack that pushed me over

The multiple sclerosis attack that pushed me over

I was starting to “leak through” my current multiple sclerosis therapy back in 2014. I had been on basically Betaseron most of the time until I switched to Gilyenya in 2010. I was switched for the “leaking through” thought. It was holding me on the relapsing remitting sides mostly. I’d have maybe one or two per year on all the drugs. However I would worsen without a so-called attack. My current symptoms would worsen. Back in 2014 the decision was…

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