Thanks for sharing your perspectives. Really helpful things to consider when advocating for self when working with medical providers.

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…

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Ha! Yeah, I suppose a clean out might be necessary if the laundry room is going to be your storm shelter! Seriously, though, it sounds like a good option. The important thing is to stay away from windows as they can get knocked out by wind/trees. Another option I know people will use if they don’t have access to a basement is a hallway on…

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Hi Alyssa! I live in Minnesota where we have multiple tornado warnings/watches every summer. I live in a one level townhouse with no basement so I just go to the most inner room of my house which happens to be my bathroom. There are no windows (a good thing to avoid in a tornado!) and I keep a flashlight in there during the summer just in…

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Such a good question, DeAnn. I try really hard to focus on what I am able to do vs what I can’t/what I am missing. That said, there are times when those feeling of missing out come in. Lately it has been around travel. My sister and niece on currently on a 10 day trip to Italy, France and Spain. Looking at their photos every day, I have a… Read more

Welcome, Robin!  Glad to meet you~

I have been getting Evrysdi shipments for over a year and haven’t had it happen but will be on the lookout for it. Thanks for the post!

I’m from Minneapolis/St. Paul, Minnesota USA.  Lived here most of my life!

 

I started Evrysdi in January; similar to Jeremy, my first attempt at treatment. Haven’t noticed any significant gains or improvements.  Not sure what things would be like without it…if declines would have spend up.  It’s tough to know if it making any difference.

Thanks for sharing, Alyssa.  Yes, have had times when what my body needed/what was best for my health didn’t match up with what I wanted to do for work  Before COVID, I had to start working from home several days a week and had a lot of mixed emotions about not being in the office/with my team etc.  Hope that you get to a spot of peace with… Read more

Hi Davida,

I haven’t had a cold or sinus infection (my usual winter ailment) in 2020 or 2021, and I have been on Evrysdi since January 2021.  I was pretty vigilant with masking and no going out to many public events during COVID and am still pretty careful even though I have had the vaccine.

Good luck starting the medication. I was nervous… Read more

Thank you for posting!

Hi Ajay,

I am 48 years old; type 3.  About 2 weeks into starting Evrysdi (in January), I started having GI issues (loose stool/diarrhea). I adjusted my diet a bit (added in bananas and other foods to help bulk things up a bit) and definitely made sure I didn’t take it on an empty stomach, although I found it better for my stomach if I… Read more

Hi Briana,

There were a few nights when I remember having a bit of that in my legs but it passed fairly quickly.  I am similar to Kip in that my side effects were mostly GI-related, It has been over 3 months and it has gotten somewhat better and I’ve tried to manage it with diet.  Hope you start adjusting!

Exciting news, Brianna! Thanks for sharing.

In response to your question, I have been on Evrysdi since January.  Had some minor GI issues that I navigated mostly with shifting my diet a bit but overall it wasn’t too bad. I always take it after having eaten and haven’t had any nausea.  I haven’t noticed any huge shifts in function, but I keep… Read more

Congrats on keeping the first appointment! I encourage you to stick with it for awhile.  Talking about hard stuff sometimes leads to a post-appointment “emotional hangover” but that is normal and part of the process.  The emotions that talking about hard stuff brings up need to get out.  Ignoring them or keeping them stuffed down don’t make… Read more

Hi Alyssa,

 

Thanks for sharing, Alyssa.  Therapy can be a helpful tool in navigating life.  I started seeing a therapist for something I thought was completely  unrelated to my SMA diagnosis (the ending of a 10+ year relationship/calling off an engagement) but we ended up talking quite a bit about how me having SMA has impacted many facets… Read more

I, too, was nervous before the first dose.  I agree with Mark’s comment…it’s like drinking strawberry (very artificial strawberry!) water.  I drink a few sips of water after and then rinse my mouth out with some water to get rid of any leftover taste.  It’s been 3 weeks for me and I am still getting used to getting the dosage correct in the… Read more

Hello!   I have been taking Evrysdi for two weeks.  I have had some mild GI issues but adjusted my diet for a bit and things have been getting back to normal. I haven’t noticed any other side effects.  It think it is too soon to notice any particular outcomes, although I may have a bit more energy.