Rebecca D.
Forum Replies Created
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I started Relyvrio January 4th and stopped the 9th. I have a bladder condition (interstitial cystitis) that had been under control for years until Relyvrio. I knew taking it was a gamble, but wasn’t prepared for how quickly it triggered a debilitating flair of bladder pain.
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After a bad experience with Tudca, I started Relyvrio yesterday with some trepidation. Tudca instantly started cramping & diarrhea, but so far I’m okay with the Relyvrio, despite not having a gallbladder. I also take Radicava & Riluzole. My liver enzymes are elevated due to Riluzole so it will be interesting to see what effect Relyvrio has.
Approval took about 8 weeks. The worst part of the whole process has been dealing with Accredo, the specialty pharmacy. I’m supposed to have co-pay assistance from the drug company, but it still isn’t going through. ????
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I’ve been in PT for about a year. What started as strength training for my upper back & core evolved to a lower body focus after I complained to my therapist about tripping all of the time last August. Two neurologists and multiple EMGs & MRIs later, I was diagnosed with ALS on May 10th. My right foot drops and my leg is extremely weak. I’m still going to PT and focusing on maintaining strength where I can.
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Richard – thank you so much for sharing this info. I was diagnosed May 10th and am just coming out of my diagnosis fog and trying to figure out next steps. Your lists and resources will help tremendously.