Should I continue taking the medication or not?

[kevin-schaefer]

Hello! Thanks for sharing.

Treatment experiences and side effects will vary, and I do recommend speaking with your medical team about this. Personally, I’ve only ever been on Spinraza, and I’ve been fortunate to not have any side effects. But I’ve heard from many others who either have prolonged side effects, or they have ones that get better over time. I would try to monitor it with your healthcare team before making a decision. Wishing you the best!

[netu]

Thank you for the advice, Kevin!

[kevin-schaefer]

Absolutely, I hope you find a solution soon!

[JeffS]

Personally for me, I am on the lucky ones and have literally zero out-of-pocket for a Rusby. I have a little to no side effects since I’ve been using the pill version. The medication has not stopped the progression, but I strongly feel it has slowed it down. I am also 60 years old, so I believe that my age has an effect on my strength and stamina, even though I can go all day without getting tired. So I guess what I’m saying is at this point there’s no harm in continuing to take it and I would be curious how I would be without taking medication for the last three years, I really would rather not find out.

[netu]

Amazing! Right now, my medicine is in liquid form but it’s interesting question, is the pill better option!? Something what to speak about with my doctor. Thank you for sharing, I wish you the best!

[rochelle-johnson]

Hi! Two things that helped me: taking a probiotic to balance good versus bad gut bacteria and eating a little more than normal in the morning (applesauce was a good friend). Once I got on track, I didn’t have those episodes again. I know it’s different for everyone, though. Really sorry you’ve been going through this, and I hope it gets better very soon!

[netu]

It’s so great to read that these things have helped you. Thank you for sharing!🤎

[oezi]

Hi

My daughtet takes Evrysdi 4 years and the past 1 year she has also problems with diarrhea

[cinder]

In my experience, two things have helped: 1) When I was still taking the liquid medication, I talked with a pharmacist after talking with my doctor, pretty shortly after having it prescribed, for the same reasons. Never forget about your pharmacists being part of your care team! He had recommended I switch the time of day I took it (as well as some fiber, but I was very off-and-on with that) and that helped a lot for me. I kept that same time of day until… 2) I recently switched to the tablet version. If it’s available for you and you can swallow pills (or have someone crush it up in water (following the medication guide of course)), try that! I have pretty mixed reactions with sugar alcohols, mostly the -ols (so sorbitol, xylitol, mannitol, etc.), and the liquid version of the medicine is made with mannitol to sweeten it up, whereas the tablet is just the medication and binders, like any other form of tablet medicines. I also like it because it’s so much less work just to keep a small pill bottle on the counter vs. the bottles of medicine in the fridge, keeping track of syringes, etc.

So I might start with the pharmacists in the meantime while you talk with your doc about switching to the tablet form! I hope one of those options can help – I know the struggle of having a sensitive stomach!

[mike-huddleston]

Mostly good suggestions but should be noted that the pill form should not ever be crushed. Per their website, “Evrysdi tablets can either be swallowed whole with water or as a mixture in 1 teaspoon (5 mL) of room temperature bottled water. They cannot be chewed, crushed, cut, or dissolved on the tongue.” (bolding by me). Their “mixture in 1 teaspoon of room temperature water” refers to it being dissolved in that water. It further states. “Crushing or breaking the (pill’s) film coating may result in the extended exposure to the active ingredients, which may pose safety risks.”

[cinder]

Ah yes good point. I should have just said (and meant) “in water.” That’s what I get for typing too fast. 🙂 Don’t crush your tablets y’all.

[amy-olmscheid]

I have been taking Evrysdi for 2+ years now and recently switched to the pill form. I have noticed a slight improvement in GI issues with the pill (vs. liquid). My side effects were definitely not as significant as yours but I had periodic episodes of GI distress. For some reason the pill vs. liquid is better on my digestive system (at least so far). Good luck!

[susana-m]

Hi netu. If the side effects are worse than the issue you’re addressing, I think it’s worth a very serious conversation with your doctor. Big picture is important to consider but that amount of diarrhea affects your physical health and your emotional well-being in fundamental ways.

Remember that our medical teams share their expert advice, but we are the ones who live the consequences of those decisions. Also our caretakers.

I think you’ve got some really good advice in terms of speaking to the pharmacist, adding probiotics, possibly changing the liquid to pill form. I have found acupuncture to be very helpful and changing my diet to a more holistic eastern approach has made a big difference in my life.

Also consider that with these new breakthroughs, there will be other approaches and other medications down the line. Choosing to stop the medication does not mean giving up on yourself.

Make the choice that’s right for you, support will be here however that looks.