How do you feel after an infusion?

How do you feel after an infusion?

It’s funny because all my complaining last week about NOT getting my infusion leads to this: I feel awful. Please, please give me my medicine. Pump me up with all this shit so I can feel lousy.  kind of makes you wonder what the hell I was I fighting for. All anxiety for four days straight. All so I could feel horrible. Rituxan Infusion Finally Done but still wasn’t smooth.

It never fails someone always asks me, does it make you feel better? No, After I go through the stage of feeling horrible, I feel no different. Wanna know the truth, I honestly have no idea what it does anymore. I mean I haven’t had a relapse since 2014 but I haven’t remained stable either. My progression has been significant if you compared me now with how I was back 6 years ago. I certainly didn’t need any relapse to worsen my condition. So what exactly these medications are doing, I’m not exactly sure anymore.

The list of medication available for secondary progressive MS is still not very long. There is Mayzent which is part of the Gilyenia family, a drug I already failed on in the relapsing form. Then you have Mavenclad. I can’t take a drug that has such a high risk of causing other diseases, like cancer, to treat my current disease. That just isn’t for me at this point. Finally there is Novantrone. This has actually been around for a while but it is another very serious drug. There is usually a limit to the number of treatment given because of the list of possible side effects and risks involved with this drug. All the other drugs are listed for relapsing remitting MS but may have shown some improvement to secondary MS. Ocrevus/Rituxan falling into that category.

However, what it is actually doing I don’t know anymore. Maybe it’s slowing my progression, maybe it’s still preventing some type of relapse. I don’t have a clue. I know I’m not going to discontinue my medicine to see if it’s working. Therefore I pump myself up with this shit and feel horrible until it wears off and I do it again six months later. The three alternatives, don’t seem like very good alternatives for me at this point. So we stick with what we have until something else comes along. After 22+ years, it’s the best I can do. 

3 thoughts on “How do you feel after an infusion?

  1. My experience has been that I don’t notice any benefit of any of the stuff I take until I STOP taking it. So in that sense it slows the progression, but I never feel magical or new. Fell like shit for a few days quite frankly after the infusions

  2. Maybe you’ve moved to Secondary Progression as I recently have. It sounds like the meds are more trouble than they are worth.

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