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Jane Johnson Murray replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
I have been taking Relyvrio for a couple of months. I eat dark chocolate before and after to help with the bitter taste. (That’s my story and I’m sticking to it!)
I had been using listerine strips but they stopped working.
I feel slightly dizzy for a few hours after each dose, but then it is gone.
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Jane Johnson Murray posted an update 4 months, 2 weeks ago
@patty Good luck with the Relyvrio.
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Jane Johnson Murray replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
I spoke to a specialty pharmacist and asked about the gel caps. She suggested that the compounds need to be fully dissolved in water before they reach the stomach, in order to be absorbed.
I also enquired about the fact that one shouldn’t take antacids containing Aluminum while on Relyvrio. She suggested that the sodium ion in the sodium p…[Read more]
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Jane Johnson Murray replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
I am taking relyvrio and just started on the two a day. It is simply horrid and makes me shudder involuntarily.
The pharmacist at Optim suggested Listerine strips before and after which helps a bit.
Drinking all of the liquid at once makes me feel nauseated for a few hours after. And the taste lingers.
Is there a way to contact the…[Read more]
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Jane Johnson Murray posted an update 5 months ago
I have ALS that, so far, has only shown itself as weakness in shoulders, arms, wrists, and hands. My fingers have just started to become weak. This amount of progression has taken two years.
I am lucky enough to have insurance that is paying for both Radicava and Relyvrio. I have been on oral Radicava for quite a few months and have just started…[Read more]
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Jane Johnson Murray became a registered member 5 months, 1 week ago
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Hello Jane,
Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
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Hi Jane,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]
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