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Tammy,

I have been on Evrysdi since end of April and take Hydrocodone and Tramadol every night. Their pharmacist stated that there would be no interaction and I have not had any issues to date

Shane

Thanks, I’ll probably dilute it with water for now and keep the Liquid Hope in the back of my mind. When you do the bolus with the syringe do you just dump it into the syringe, or do you suck it up and push it in with the plunger? New to this method, so clueless.

I get Liquid Hope from Coram as well. When I first started getting it, Coram did not stock it at the “local” distribution building, but they had it at their national warehouse and sent it out from there. I would get all of my supplies like a day or two after ordering a shipment, and then the food would arrive a day later. I think they might have…[Read more]

Thanks ladies!

Kelly, we have talked about RFB before, and I’ve kept that bug in my ear. I’m hopeful it will help with my digestive issues. I’m fairly certain it’s a combination of the formula and Evrysdi. Now that I’ve given the dietitian’s recommendations a shot it’s time to go rogue.

Yvette, I appreciate the recommendations. It’ll be…[Read more]

Okay, I would be that other community member Yvette was referring too. I’ve been taking RFB now since around 2016 when my stomach just suddenly stopped tolerating the usually nutritionist recommended formula. Let me clarify. Most traditionally trained nutritionists don’t have a clue about the formula needs of someone with SMA. I started taking RFB…[Read more]

I forgot to mention… I switched DMEs in order to get my food, but I think you might be able to work with the people at RFB directly. I know you could a few years ago. Julie (the original owner) was extremely helpful and worked hard to either get more DMEs to carry it or send it directly for the company. I’m not sure if they are still doing that…[Read more]

So glad you are trying something that will probably be a lot better for you! I do half Real Food Blends and half Liquid Hope, and I’m much healthier than I was with formula.

You have a few options for administering it:
– If you want the most simple option, I’d suggest doing it with a big syringe. Since you are used to gravity feeds, I’m…[Read more]

I used to have this problem a lot. In the mid-2010s I switched to using a mini joystick. I tried to write more about it in this post but something seems to be preventing me from doing that. It’s cool tho… it’s handheld.

I hear you. I’m so sorry you’re going through this. You’re not alone. Hugs.

Based on your idea, you might want to look into getting some Instamorph or Sugru. I’m thinking you could maybe make a whole contoured platform from Instamorph, OR adding some ridges to what you already have with Sugru.

I have just bought an iPhone 12 mini and love it. I briefly had an XR which I found too heavy. My granddaughter has SMA II and she helped me choose the mini, which she would also like herself. Although it is very small and lightweight, the screen seems to be perfectly adequate.

I use one of those micro joysticks with an index finger with my palm resting on a hard flat shaped pad, and yes it is very difficult to keep it just in the right place when going over any bumps in the roadway. It is frustrating.

To fix this problem correctly, one day I plan to put some really deep grooves into my pad so my hand sits down into it…[Read more]

Okay thanks! Yeah I can’t remember whether or not I asked them about that or not. But I will wait until tomorrow when they reopen to call and ask. Just to be safe. I don’t really have a fear of having any interaction, my fear is more of like something I take that may render the Evrysdi and effective. It’s not really bothering me that much it’s…[Read more]

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.