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First Kesimpta dosing shot

First Kesimpta dosing shot

I started getting freaked out reading other people’s first shot reactions on the Facebook Kesimpta group. I thank Sherry for commenting on my Kesimpta delivery blog and telling me about the group but it didn’t help my nerves. Thankfully, I had a video conference with my neurologist yesterday. She explained Kesimpta is nothing like the interferon shots that I took for the first 12 years. The shots that still give me those horrible flashbacks that are causing all this fear….

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Kesimpta delivery scheduled

Kesimpta delivery scheduled

I got a call yesterday from the pharmacy about the delivery of my new medication, Kesimpta. I am being mailed 3 doses for my first month. I take a shot weeks 1,2 and 4. From there it will be once a month. The shot is recommended to be in my thigh, stomach or upper arm. All the memories of the years of Betaseron come flooding back. Betaseron was my main MS drug until Gilenya, a pill, came out. 12 years…

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Kesimpta was approved

Kesimpta was approved

I broke my glass coffee pot this weekend. This seems to happen every two years if not yearly. I do have to say the last time I wasn’t the one who broke it but I shouldn’t brag because I’m pretty sure every other time it was me. I don’t buy expensive coffee pots for this precise reason but I really hated my last purchase. I always put cinnamon in my coffee grinds and this basket constantly caused the caused the…

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Kesimpta was denied

Kesimpta was denied

My neurologist and I decided we were going to switch to Kesimpta by my next infusion date. https://multipleexperiences.org/2021/04/26/possibly-switching-to-kesimpta/. My doctor wanted to start the process in July although my next infusion date isn’t until September. We entered the prescription into the pharmacy to start the process. It was less than 24 hours later that I received the denial from my insurance. The denial reason was that this medication wasn’t necessary and there may be other medication that can met my…

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I made lemonade

I made lemonade

I feel better than I did after writing Monday’s blog. Going to the neurologist can definitely take its mental toll on me. Hearing my doctor tell me I’m worse, even though I knew this without him, still doesn’t make things better. Especially when the answer to what can be done is somewhat nonexistent. That is always the hardest part, at least for me at my stage of MS. I’m secondary progressive in every textbook sense of the word. I continue…

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Possibly switching to Kesimpta

Possibly switching to Kesimpta

Happy Monday to everyone. I’m hoping the weekend was lovely for all. I was hit with some kind of stomach bug that disrupted my Saturday. That was the first time in a long time I felt those crippling stomach pains. Good to know I could still feel things in my belly. I must admit, sometimes I wonder since I never do. I mean I can stub my toe and go into a spasm that locks my legs up for a…

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Important information for Ocrevus and Rituxan patients and the COVID-19 vaccine

Important information for Ocrevus and Rituxan patients and the COVID-19 vaccine

I had a phone conference with my MS specialist yesterday in New York City. We discussed many things but the most important thing she discussed was the Covid vaccination. She knows that I had already had received both vaccines and of course that I take Rituxan. Rituxan is the older sister drug to Ocrevus. It seems that for people on these drugs, the antibody production for SARS-CoV-2 was reduced compared to other multiple sclerosis drugs. In my doctor’s easier language,…

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Feeling fine still but attitude needs an adjustment

Feeling fine still but attitude needs an adjustment

So far I feel fine since my Rituxan infusion, although I am all too aware it won’t stay this way. After being on Rituxan or Ocrevus for the last 4 years you kind of get a feel for these things. I do have to say I don’t feel bloated from the infusion. I think it is because I drank so much water. For some reason my mouth became Sahara desert dry during and the night after I received the medicine….

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Ocrevus vs Rituxan

Ocrevus vs Rituxan

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…

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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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