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Derek Markulin replied to the topic Drug interaction in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 6 months ago
I took hydrocodone sporadically for my back while taking Evrysdi with no side effects. I believe I called Accredo and it was not listed under their adverse drug interactions so it was ok to take. But in saying this I know we all react differently to medications so I can only say it didn’t cause any issues for me.
Hope your back gets better.
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Derek Markulin replied to the topic Evrysdi side effects in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 10 months ago
Hello Ajay,
I am 45 with type 3. I have been on Evrysdi for about a month now and I initially felt like I was buzzing as in I drank some really strong coffee or espresso. It actually kept me up for the first few nights but subsided after about a week. I take mine after lunch everyday just after eating. I believe I was advised to take after a meal…[Read more]
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Derek Markulin replied to the topic Going to a Chiropractor in the forum Adults With SMA 2 years, 2 months ago
I have gone to a chiropractor for years just for back adjustments but haven’t recently. I would get a deep tissue/ stretching massage at the chiropractic office and then adjustment right after. My neck and back would really make some cracking sounds as he would adjust me and I always felt better after an adjustment. But in saying this, I also have…[Read more]
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Derek Markulin replied to the topic Insurance (Medicare) Coverage in the forum Roche and Genentech- Evrysdi (risdiplam) 2 years, 7 months ago
I am very interested to see how this works. If one Part D plan would work better over another as far as out of pocket maximums and co-payments. I believe four of the plans had $47 copays for brand name whereas Cigna has a 20% co-pay for brand name. The annual open enrollment period to select a new Part D plan is coming up October 15 to December…[Read more]
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Derek Markulin replied to the topic Returning to a Neurologist in the forum Roche and Genentech- Evrysdi (risdiplam) 2 years, 7 months ago
I see a neurologist once a year at the MDA clinic to pretty much spend all day, where I meet with the counselors, occupational therapist, physical therapist, geneticist and neurologist along with student doctors who are always observing my exam by the neurologist. I also have to see the neurologist regarding my spinraza injections when I was…[Read more]
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Derek Markulin replied to the topic Home Improvement Grants in the forum Adults With SMA 2 years, 8 months ago
I don’t know of any grant’s but I do know if you are trying to get or seeking employment that the States Vocational Rehabilitation program could help with home modifications but it takes time unfortunately.
I was also told that some church groups or charities could possibly help but I have not found any as of yet.
I’m interested to hear if…[Read more]
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Derek Markulin changed their profile picture 2 years, 8 months ago
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Derek Markulin replied to the topic Are you going to send your child to school? in the forum SMA Parents and Caregivers 2 years, 9 months ago
Fortunately for my wife and I, we decided to homeschool our kids at the beginning of the school year in 2019 so before the pandemic. We decided this as we found our son was learning, for lack of better words, bad behaviors and words from other kids at school. We also were constantly getting sick as they bring everything home which wasn’t fun. And…[Read more]
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Derek Markulin replied to the topic Nausea in the early afternoon? in the forum Adults With SMA 2 years, 9 months ago
Hello Brianna,
I drink match tea almost every morning now. When I first started drinking matcha it really gave me a jolt in how I felt but it did make me a little nauseous afterward which made me stop drinking it for awhile. But after awhile I realized the trade off was worth it to me and started again and surprisingly I no longer feel nauseous…[Read more]
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Derek Markulin replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 2 years, 9 months ago
Hello Kevin,
I know this is probably not possible due to financial costs but I wonder if it is possible to get both treatments. Do you know if this has been discussed?
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Derek Markulin posted a new activity comment 2 years, 9 months ago
Thank you Alyssa!
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Derek Markulin changed their profile picture 2 years, 9 months ago
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Derek Markulin became a registered member 2 years, 9 months ago
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Hi Derek. Welcome to the forums. I’m Alyssa, one of the moderators here. We have lots of resources for you to peruse but value our members’ input as well. If you have any questions please feel free to reach out to me, Kevin, or DeAnn. You can also introduce yourself in the welcome forum here. Thanks for joining us!
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Thank you Alyssa!
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