Infusion Days
Infusion days have become their own little ritual for me at this point - snacks, a good podcast, comfy blanket. Anyone else have a routine that makes infusion days more bearable? Would love to steal some ideas.
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3. MS Treatments & Medications
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Anyone else have a "getting used to it" phase with their meds? First infusion, first injection, first weird side effect you didn't see coming - what was that adjustment period like for you? Feels like nobody really prepares you for it.
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Any input on treatments
Hi all, I recently joined and this is my first post. I’m going to an MS specialist in NYC Sept 1st. I’m getting a 2nd opinion from a diagnosis for MS that I received nearly 3 years ago from a general neurologist. She had told me I should’ve been diagnosed 5-6 years before that so about 9 years ago now. I have never began a treatment. Tried diet but I can’t stick to it as well as I’d like. I’m considering treatment and considering either Kesimpta or Ocrevus Zunovo. I was hoping to get input on others experiences. I see very mixed reviews online. I know efficacy varies person to person. Side effects can be different as well. I saw where loading doses are hard on many people with Kesimpta. I have issues with heart palpitations and read a lot where some people experienced racing heart during loading dose. Any…
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marci
Aug 04
Ocrevus is the best on the market today. It is very well tollerated, I had no side effects and found it to work well. In fact, when I had to go off of it for a trial I found myself slip with new symptoms. I'd get on something. I did't treat for 10 years and looking back, I wish I had. I'd also suggest exercise/stretchihg daily, just do as much as you can (safely). Spearately I keep up on medical trials and news in a community feed I created, you can read it too (I make it publicly available).
https://mslife.surf.social?ref=share
Six months on my current treatment and finally feeling like myself again. Wanted to share some hope for anyone just starting out.
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bwest6433
Jul 25
Hi Peter that’s really great news and hoping that continues. I haven’t started a treatment yet and have been afraid to. I’m thinking about starting one soon. Which treatment are you on that’s working for you?
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Yeah, definitely. My first infusion I braced myself for the worst and honestly the actual process was fine, but nobody warned me about the fatigue crash the day or two after - I just thought something was wrong with me the first time it happened. Took a couple rounds to realize that was just part of my normal.